Communicating the diagnosis of spinal muscular atrophy in endogamous vs. non-endogamous regions.

INTRODUCTION: The high prevalence of endogamy, or inbreeding, in northeastern Brazil, is due to historical and cultural factors, with large families living in cities far from the coast and subject to low socioeconomic and infrastructure levels. This breeding practice results in low genetic variability with an increased prevalence of rare autosomal recessive and neurodegenerative diseases, such as spinal muscular atrophy (SMA). OBJECTIVE: Understanding the impact of communicating the diagnosis of SMA on the mental health of patients and their families and the differences between the Northeast (endogamous region) and the other regions of Brazil (non-endogamous ones). METHODS: Cross-sectional study obtained through a structured questionnaire about the moment of receiving the SMA diagnosis, containing the Impact of Event Scale-Revised. RESULTS AND DISCUSSION: The sample consisted of 100 volunteers from all regions of Brazil, 47 patients diagnosed with SMA and 53 family members present at the time of the diagnosis. There was a predominance of females (83%) and homogeneity between the groups for the variables gender, age, color, education, religion, and SMA subtype (1, 2, 3, and 4). The Northeast region, representing 43% of the sample, despite being less economically favored, showed greater satisfaction with medical care and inclusion in health services, with less self-reported psychological trauma and fewer signs of post-traumatic stress disorder (PTSD) related to the moment of receiving the diagnosis. The non-endogamous regions, in turn, reported the presence of strong waves of emotion, sleep problems, feelings of irritability, anger, and the presence of bad thoughts related to this situation. CONCLUSION: The feeling of inclusion in health services and satisfaction with medical care in the endogamous region had a positive impact on the mental health of those involved, reducing psychological trauma and signs of PTSD arising from the communication of the SMA diagnosis.

Distributive justice and equity in resource allocation: a temporal analysis of hospitalization costs in indigenous populations in Brazil.

INTRODUCTION: In Brazil, a country of continental dimensions, the health needs of each region have an impact. In this context and the name of the principle of equity, the SUS organizes actions especially aimed at social groups such as the elderly, children, pregnant women, and indigenous peoples. The concept of justice proposed by John Rawls is one of equity, which is essential to this country. METHODS: This is an ecological, descriptive study, which analyzed hospital spending on cardiovascular diseases in the Unified Health System (SUS) among the indigenous elderly population and other ethnicities/colors in Brazil, between 2010 and 2019. RESULTS: Hospitalization costs and fatality rates for indigenous populations and other colors/ethnicities, between 2010 and 2019, were evaluated. A reduction in hospitalization costs for the indigenous population and an increase in other populations was observed throughout the historical series, while there was an increase in fatality rates for both groups. A comparison was made between hospitalization costs and the fatality rates of indigenous populations and other colors/ethnicities according to sex, between 2010 and 2019. It was observed that regardless of sex, there are significant differences (p<0.05) between hospitalization costs and fatality rates, with higher costs for patients of other colors/ethnicities and higher fatality rates for the indigenous population. CONCLUSIONS: Hospitalization costs due to cardiovascular diseases in elderly people from indigenous populations were lower compared to other ethnicities in most federative units, which may suggest an unequal allocation of resources or access for this indigenous population to the SUS. Although there is no strong correlation between spending on hospital admissions and fatality rates, it was found that these rates increased between 2010 and 2019, while spending was reduced.

Communication strategies used by medical physicians when delivering bad news at the Maputo Central Hospital, Mozambique: a cross-sectional study.

BACKGROUND: Physicians' communication with patients and their families is important during both the disease diagnosis and prognosis stages and through the follow-up process. Effective physician communication improves patients' quality of life and satisfaction with care and helps reduce suffering for those newly diagnosed with advanced progressive illnesses. This study aims to identify the communication strategies physicians use in the transition to palliative care and how these professionals perceive their academic and clinical preparation concerning this task. METHODS: A cross-sectional and quantitative study. Physicians providing palliative care at the Maputo Central Hospital, Mozambique, were invited to complete a 17-question questionnaire. This questionnaire was based on a Brazilian adaptation of the Setting-Perception-Invitation-Knowledge-Emotions-Strategy (SPIKES) tool, the P-A-C-I-E-N-T-E protocol, with additional questions regarding socio-demographic details and the integration of "communication of bad news" into hospital training. RESULTS: Of the 121 participants, 62 (51.2%) were male, and 110 (90.9%) were general practitioners, with a median age of 36 years old. They had worked in clinical practice for a median of 8 years and in their current department for three years. The majority of the participants considered that they have an acceptable or good level of bad news communication skills and believed that they do it in a clear and empathic way, paying attention to the patient's requests and doubts; however, most were not aware of the existing tools to assist them in this task and suggested that delivering bad news ought to be integrated into the undergraduate medical course and included in hospital training. CONCLUSIONS: This study adds to our understanding of physicians' strategies when communicating bad news in the context of palliative care at one Mozambique hospital. As palliative care is not fully implemented in Mozambique, it is important to use protocols suitable to the country's healthcare level to improve how doctors deal with patients and their family members.

Communicating the Spinal Muscular Atrophy diagnosis to children and the principle of autonomy.

INTRODUCTION: The trinomial relationship between physicians/children/guardians is essential in the process of communicating a disease and its prognosis. OBJECTIVE: Analyzing the exercise of autonomy by this trinomial relationship in communicating the diagnosis of spinal muscular atrophy (SMA).   METHODOLOGY: Caregivers of SMA patients answered a questionnaire containing a structured interview and the Event Impact Scale - Revised. RESULTS: The sample comprised 50 volunteers, 94% of whom were female caregivers. Psychological trauma was predominantly reported when caregivers communicated the diagnosis to children. 22% have a high risk of post-traumatic stress, relating the feeling of unpreparedness in communicating this to the child. CONCLUSIONS: It was identified that the failure in communication is the main factor for negative repercussions on the autonomy of children and their guardians, with self-reported psychological trauma, besides the high risk for post-traumatic stress syndrome.

Gender Transition: Is There a Right to Be Forgotten?

The European Union (EU) faced high risks from personal data proliferation to individuals' privacy. Legislation has emerged that seeks to articulate all interests at stake, balancing the need for data flow from EU countries with protecting personal data: the General Data Protection Regulation. One of the mechanisms established by this new law to strengthen the individual's control over their data is the so-called "right to be forgotten", the right to obtain from the controller the erasure of records. In gender transition, this right represents a powerful form of control over personal data, especially health data that may reveal a gender with which they do not identify and reject. Therefore, it is pertinent to discern whether the right to have personal data deleted-in particular, health data-is ethically acceptable in gender transition. Towards addressing the ethical dimensions of the right to be forgotten in this case, this study presents relevant concepts, briefly outlines history, ethics and law of records considering the evolution from paper to electronic format, the main aspects of identity construction and gender identity, and explores the relationship between privacy, data protection/information control and identity projection. Also, it discusses in gender transition the relation between "the right to self-determination", "the right to delete", and "the right to identity and individuality". Conclusions on the ethical admissibility of the 'right to be forgotten' to control gender-affirming information are presented.

Right or duty of information: A Habermasian perspective.

BACKGROUND: The theoretical framework of Jϋrgen Habermas suggests that effective communication requires competent participants with an objective attitude that complies with the rules and worlds designated as objective, social and subjective. This situation determines communicative action, which stimulates the search for mutual understanding and results in a process of interaction that promotes self-determination. OBJECTIVES: In this study, the discharge letters of patients with myocardial infarction were explored regarding the provision of information. The patient's right to information and the duty of informing were analysed according to the perspective of Jϋrgen Habermas. RESEARCH DESIGN: This was a cross-sectional analysis (from a broader longitudinal study) of all discharge letters that were directly related to nursing interventions regarding the provision of information to 106 patients. In this major study, the difficulties faced by patients who experienced a myocardial infarction and the changes in their lifestyles were analysed based on the type of information received. ETHICAL CONSIDERATIONS: The hospital Ethics Committee approved the study, which complied with ethical principles and required informed consent. FINDINGS: In the nursing letters, interventions related to the provision of information were conducted at an average of 3.59 interventions per patient. For 8.5% of the patients, however, no interventions related to the provision of information were performed. The most common area of information during hospitalisation was related to the management of signs and symptoms and applied to 90.6% patients. DISCUSSION: The nursing interventions did not cover patient education, transition processes or awareness of the disease. Thus, the right to information can be questioned. CONCLUSION: Information is a right, and communication is extremely important. Health professionals should be aware of this importance regarding both care management and the satisfaction guarantee. The sharing of information by health professionals based on their competency is essential for patients to exercise their right to self-determination and decision-making.

Ethics, equity, and human dignity in access to health services: the case of cochlear implants in children and adolescents.

Compare the number of implants performed in the last 12 years for children and adolescents up to 18 years in different regions of mainland Portugal. Study the trend of total implants over the years as well as the percentage held in early ages. Verify to what extent this practice is in line with the values of fairness and justice that underpin European health systems. A retrospective study of cochlear implantation was conducted using a hospital database containing all the episodes with cochlear implant procedures in public hospitals that occurred in Portugal between 2000 and 2012. An analysis by age, year, and region of the implants were performed. The Northern and Central regions, the nearest big center specializing in cochlear implants in Portugal, are those with the largest number of implants: 2.0 and 2.4 per 10,000 children, respectively. The regions of Alentejo and Algarve, which are more rural and remote regions of the center, record the smallest number of implants, 1.1 and 1.5 per 10,000 children, respectively. Over the years, there seems to be an increase of implants implemented in children under 18, most notably from a significant reduction in 2011 and 2012. However, an increase in children implanted before 24 months has been observed from the same zero children at this age in the early years studied to 0.46 per 10,000 inhabitants in 2012. The right to adequate health care must be in accordance with the full respect of fundamental human rights. Economic, social, and educational conditions must also be guaranteed in this process of auditory rehabilitation. Societies must develop a system of ethical health priorities, so that even in situations of financial crisis, the most disadvantaged sectors are not the most penalized ones by the inevitable economic constraints that are implemented.

The impact of economic recession on health-care and the contribution by nurses to promote individuals' dignity.

The health sector is facing many challenges, and there is a need to maintain the delivery of high-quality health-care. Issues related to equity and access to health-care have emerged in a context of an economic recession in which the sustainability of the health system depends on everyone, including the actions and decisions of professionals. Therefore, nurses and their skills may be the answer to ethical, professional and community health management, but this recession could lead to major problems in the education of nurses in daily health-care practice. Due to the limited availability of resources, nurses are increasingly taking leadership positions, continuing to develop their critical abilities and thinking skills, and considering sciences such as deontology and ethics. The main goals of this study were to reflect on the economic recession and its impact on health-care and to demonstrate the contribution of nursing to the sustainability of health-care and in the promotion of individuals' dignity. The authors conclude that health-care depends on economic redistribution and, in this context, needs to be equitable and fair. Nurses have the responsibility to develop their profession according to the underlying sciences and can therefore strategically help the healthcare system.

The experience of an information system for nursing practice: the importance of nursing records in the management of a care plan.

Health information systems are becoming common because they are important tools to support decision making and assist nurses in their daily interventions. The Information System for Nursing Practice promotes consistent nursing records, as it is directed to the nursing practice and process. The aims of this study were to identify and describe the most frequent type of nursing actions in the care plan for a patient after acute myocardial infarction, considering the seven-axis model of the International Classification of Nursing Practice and the rate of health education given to patients during hospitalization. A cross-sectional analysis was performed retrospectively by searching the computerized database of the Information System for Nursing Practice. We verified some gaps in information with regard to unidentified records of diagnoses and interventions. During hospitalization, the most used interventions were in the fields of observing (40%) and managing (23%). Interventions associated with management of signs and symptoms were more frequent and were performed in 84.9% of the patients. In the field of informing, health education in relation to diet was performed in 21.7% of the patients; exercise, in 16%; and tobacco, in 11.3%. The use of nursing records and information systems can improve nursing care coordination and care plan management.

Priority setting in health care: a complementary approach.

Explicit forms of rationing have already been implemented in some countries, and many of these prioritization systems resort to Norman Daniels' "accountability for reasonableness" methodology. However, a question still remains: is "accountability for reasonableness" not only legitimate but also fair? The objective of this paper is to try to adjust "accountability for reasonableness" to the World Health Organization's holistic view of health and propose an evolutionary perspective in relation to the "normal" functioning standard proposed by Norman Daniels. To accomplish this purpose the authors depart from the "normal" functioning standard to a model that promotes effective opportunity for everyone in health care access, because even within the "normal" functioning criteria some treatments and medical interventions should have priority upon others. Equal opportunity function is a mathematical function that helps to hierarchize moral relevant necessities in health care according to this point of view. It is concluded, first, that accountability for reasonableness is an extremely valuable tool to address the issue of setting limits in health care; second, that what is called in this paper "equal opportunity function" might reflect how accountability for reasonableness results in fair limit-setting decisions; and third, that this methodology must be further specified to best achieve fair limit-setting decisions. Indeed, when resources are especially scarce the methodology suggested in this paper might allow not only prioritizing in an "all or nothing" basis but can contribute to a hierarchy system of priorities in health care.

Alzheimer, dementia and the living will: a proposal.

The world population aged significantly over the twentieth century, leading to an increase in the number of individuals presenting progressive, incapacitating, incurable chronic-degenerative diseases. Advances in medicine to prolong life prompted the establishment of instruments to ensure their self-determination, namely the living will, which allows for an informed person to refuse a type of treatment considered unacceptable according to their set of values. From the knowledge on the progression of Alzheimer disease, it is possible to plan the medical care, even though there is still no treatment available. Irreversible cognitive incapacity underlines the unrelenting loss of autonomy of the demented individual. Such a loss requires the provision of specific and permanent care. Major ethical issues are at stake in the physician-patient-family relationship, even when dementia is still at an early stage. The authors suggest that for an adequate health care planning in Alzheimer disease the living will can be presented to the patient in the early days of their geriatric care, as soon as the clinical, metabolic or even genetic diagnosis is accomplished. They also suggest that the appointment of a health care proxy should be done when the person is still in full enjoyment of his cognitive ability, and that the existence and scope of advance directives should be conveyed to any patient in the early stages of the disease. It follows that ethical guidelines should exist so that neurologists as well as other physicians that deal with these patients should discuss these issues as soon as possible after a diagnosis is reached.

Multidimensional Study of the Attitude towards Euthanasia of Older Adults with Mixed Anxiety-Depressive Disorder.

INTRODUCTION: This study aims to verify if older adults with mixed anxiety-depressive disorder are more prone to euthanasia and identify factors that interfere with their satisfaction with health and capacity for well-informed decisions. MATERIAL AND METHODS: The study applied a paper questionnaire composed of a sociodemographic section and a battery of scales (to assess depression, anxiety, cognitive performance, suicide risk, therapeutic adhesion, functionality, loneliness, attitude towards euthanasia, decision pattern, personality, empathy, and health status) in the Psychogeriatric Unity of Senhora da Oliveira Hospital in Portugal. The sample was collected by convenience to include patients and controls of the same age. Six months later, a reassessment was performed. Patients and controls were compared using descriptive statistics and a multiple-regression model. RESULTS: A total of 114 patients and 25 controls were included. Eighty-one point six percent of patients had four or fewer years of schooling. Contrary to controls, they presented mild depressive and anxiety symptoms, loneliness feelings, worse cognitive performance, a more fragile personality, higher personal distress, and a poorer health state. No statistically significant differences were found between controls and patients regarding their attitudes towards euthanasia. Patients more favourable to euthanasia had higher empathic concern, conscientiousness, and fantasy, and lower personal distress. DISCUSSION AND CONCLUSION: When addressing euthanasia in these patients, it is crucial to ensure they are fully self-determinate and that all the necessary treatment and support are available. It may not be the case when the educational level is low and a mild disease persists, significantly affecting their well-being and cognitive performance.

Cross-Cultural Adaptation and Validation of an Attitude about Euthanasia Scale in Portuguese Older Adults with Mixed Anxiety-Depressive Disorder.

On 25 May 2023, the Portuguese parliament approved the decriminalisation of euthanasia for incurable illnesses. As the experiences of other countries show us, it will be a matter of time before mental disorders are addressed. Studying the phenomenon, particularly in vulnerable groups, in advance is essential for proper law drafting. Therefore, instruments that allow an objective assessment and comparison between groups must be available. This study aims to explore the validation of Faria's attitude about euthanasia scale in Portuguese older adults with mixed anxiety-depressive disorder. A sample of 114 older adults with mixed anxiety-depressive disorder collected by convenience in the Psychiatry Department of Senhora da Oliveira Hospital in Portugal was included. The pre-final version of the scale was tested in a small group with good results. The validity of the internal structure was analysed using exploratory factorial analysis. The internal consistency study verified reliability. For construct validity, we assessed the correlation with other validated scales measuring attitudes toward euthanasia, cognitive performance, personality and empathy. The attitude about euthanasia scale showed good internal consistency. One factor was retained in the principal component analysis. Significant correlations verified construct validity. The results support the scale's usefulness and validity. This study makes available a unique instrument to assess the overall tendency of the attitudes towards euthanasia from the European-Portuguese perspective, which can be used, for example, to compare Portuguese with Brazilian older adults suffering from the same disorder. Furthermore, the adapted scale paves the way for other cross-cultural translations, adaptations, validations, and comparative analyses.

Moral judgment competence of medical students: a transcultural study.

The authors conducted a cross-sectional short-term study using Lind's Moral Judgment Test (MJT) to compare moral judgment competence (C-score) among students from a medical school in the Northeast region of Brazil and a medical school in the Northern region of Portugal. This study compares the C-scores of groups in the first and eighth semesters of study within each medical school and groups from corresponding semesters between the two medical schools. This study also evaluates the influence of such factors as age and gender on moral competence. A regression of moral judgment competence among the students in their eighth semester versus the students in the first semester of Brazilian medical school (p < 0.001) and a stagnation of moral competence among students in their eighth semester versus the first semester students in the Portuguese medical school (p = 0.06) were observed. For both the first semester and eighth semester groups, the students in the Portuguese medical school had higher C-scores than the students in the Brazilian medical school. In the analysis of the students' performances in terms of MJT dilemmas, the phenomenon of "moral segmentation" was observed in all of the groups, and the students performed better on the worker's dilemma than on the doctor's dilemma. Among students in the same semester of study, older students had lower C-scores. There was generally no significant difference between men's and women's C-scores.

Social responsibility: a new paradigm of hospital governance?

Changes in modern societies originate the perception that ethical behaviour is essential in organization's practices especially in the way they deal with aspects such as human rights. These issues are usually under the umbrella of the concept of social responsibility. Recently the Report of the International Bioethics Committee of UNESCO on Social Responsibility and Health has addressed this concept of social responsibility in the context of health care delivery suggesting a new paradigm in hospital governance. The objective of this paper is to address the issue of corporate social responsibility in health care, namely in the hospital setting, emphasising the special governance arrangements of such complex organisations and to evaluate if new models of hospital management (entrepreneurism) will need robust mechanisms of corporate governance to fulfil its social responsiveness. The scope of this responsible behaviour requires hospitals to fulfil its social and market objectives, in accordance to the law and general ethical standards. Social responsibility includes aspects like abstention of harm to the environment or the protection of the interests of all the stakeholders enrolled in the deliverance of health care. In conclusion, adequate corporate governance and corporate strategy are the gold standard of social responsibility. In a competitive market hospital governance will be optimised if the organization culture is reframed to meet stakeholders' demands for unequivocal assurances on ethical behaviour. Health care organizations should abide to this new governance approach that is to create organisation value through performance, conformance and responsibility.

Awareness of costs and individual accountability in health care.

Questions of social justice and health-care costs are some of the concerns of society. The cost caused by cardiovascular diseases can have an enormous impact, and it is important to know what patients think about illness costs when they are hospitalized. Two interviews were realized in a longitudinal study, in a sample of 106 patients submitted to expensive techniques in Cardiology (Portugal), to understand the patients' perception about the health costs and behavior changes based on awareness. We can conclude that cardiovascular diseases are a global phenomenon that generally affects all social groups. From those interviewed, 83% of the patients agree about getting information concerning the treatments and intervention costs during hospitalization because the information about costs can bring the necessary tools for improvement in patients and health resources; 70.8% of the patients say that this information could bring awareness to the patient's life, enhancing responsibility and personal autonomy.

Burnout among Physicians Working in Palliative Care During the COVID-19 Pandemic in Portugal: A Cross-Sectional Study.

INTRODUCTION: Physicians working in palliative care have a greater risk of burnout. Burnout has three dimensions: emotional exhaustion, depersonalization and reduction of personal accomplishments. Burnout is associated with different consequences for the professionals like less professional satisfaction and increase of overall levels of exhaustion. Burnout in healthcare professionals has an impact in the patients with increased probability of clinical erros. In order to monitor the quality of the care it is mandatory to assess overall levels of burnout. This study aimed to determine burnout levels and associated variables of physicians working in the Portuguese national network of palliative care. MATERIAL AND METHODS: A cross-sectional, exploratory and quantitative design was employed and participants were sampled using convenience and snowball technique. The Copenhagen Burnout Inventory was used to determine burnout levels of physicians working in the Portuguese National Network of Palliative Care. The contributions of personal, work and COVID-19 variables were evaluated in three subclasses: work, personal and patient-related burnout. The results obtained enabled the identification of healthcare professionals at risk, comparison with previous results published and to assess the impact of COVID-19 in their non COVID-19 activity. RESULTS: Seventy-five physicians participated. Socio-demographic characterization was conducted and the levels of burnout and determinants were explored. High levels of personal, work and patient-related burnout were present in 32 (43%), 39 (52%) and 16 (21%) physicians, respectively. The majority agreed that COVID-19 had an impact on their activities. Exclusive dedication to palliative care and type of palliative care unit were associated with lower levels of patient and work-related burnout. Weekly physical activity was associated with lower levels of work and personal burnout. Self-perceived health status was associated with lower levels of burnout for all subclasses. CONCLUSION: There was a high level of burnout among physicians working in the Portuguese National Network of Palliative Care. Measures to identify and prevent burnout are necessary in order to protect these professionals.

Introdução: Os médicos que trabalham em cuidados paliativos apresentam um risco mais elevado de burnout. Esta perturbação psicológica carateriza-se por três dimensões ­ exaustão emocional, despersonalização e redução da realização pessoal ­ e está associada a diversas consequências para os profissionais como a diminuição da satisfação profissional ou o aumento dos níveis de exaustão. Ao afetar os profissionais de saúde, o burnout tem também impacto nos utentes, visto causar um aumento da probabilidade de erros clínicos. Com vista a monitorizar a qualidade dos cuidados prestados é fundamental monitorizar os níveis de burnout. O objetivo deste estudo foi o de determinar os níveis de burnout e varíaveis associadas dos médicos que trabalham na Rede Nacional de Cuidados Paliativos em Portugal. Material e Métodos: Estudo transversal, exploratório e quantitativo com amostragem por conveniência e bola de neve. Foi utilizado o questionário Copenhagen Burnout Inventory para determinar os níveis de burnout de médicos que exercem funções na Rede Nacional de Cuidados Paliativos. As contribuições das varíaveis pessoais, laborais e decorrentes da pandemia de COVID-19 foram analisadas segundo três subclasses: burnout pessoal, burnout relacionado com a atividade profissional e burnout relacionado com o utente. Os resultados obtidos permitiram identificar profissionais em risco, fazer uma comparação com resultados prévios na literatura e determinar o impacto da COVID-19 na atividade assistencial não relacionada com COVID-19. Resultados: Setenta e cinco médicos participaram neste estudo. Foi realizada a caraterização socio-demográfica e determinados os níveis de burnout e variáveis associadas. Níveis elevados de burnout pessoal, relacionados com a atividade profissional e para com o utente estavam presentes, respetivamente, em 32 (43%), 39 (52%) e 16 (21%) dos participantes. A maioria considerou que a COVID-19 teve um impacto na sua atividade clínica. A dedicação exclusiva em cuidados paliativos e o tipo de unidade de cuidados paliativos estavam associados a menor nível de burnout relacionado com atividade profissional e para com o utente. A autopercepção de saúde estava associada a menores níveis de burnout em todas as subclasses. Conclusão: Foi observado um elevado nível de burnout nos médicos que trabalham na Rede Nacional de Cuidados Paliativos. São necessárias medidas para identificar e prevenir o burnout nestes profissionais,com vista à sua proteção.

Ethnic-Regional Differences in the Allocation of High Complexity Spending in Brazil: Time Analysis 2010-2019.

The following paper presents as a research problem the ethnic-regional differences in the allocation of high complexity spending in Brazil in an analysis from 2010 to 2019. This is a descriptive research in which a generalized linear model (GLM) was developed to analyze these hospital expenditures with high complexity procedures. The total spending on high complexity procedures in Brazil has increased over the past decade. The study shows that the lowest average expenditures are found in the North and Northeast regions. When comparing the spending between different ethnicities, it was observed that the only decrease between the years 2010 and 2019 was in the amount spent on procedures in indigenous people. The spending on male patients was significantly higher compared to female patients. The highest expenditures, on the other hand, are concentrated in the regions of state capitals favoring the strengthening of hub municipalities. Geographic inequalities in access still persist, even with most states already offering almost all procedures. The Brazilian territory is very heterogeneous and needs to organize its health system by regions, therefore integrated public policies and economic and social development are urgently needed.

Nursing Home Residents Hospitalization at the End of Life: Experience and Predictors in Portuguese Nursing Homes.

(1) Background: Nursing Home (NH) residents are a population with health and social vulnerabilities, for whom emergency department visits or hospitalization near the end of life can be considered a marker of healthcare aggressiveness. With the present study, we intend to identify and characterize acute care transitions in the last year of life in Portuguese NH residents, to characterize care integration between the different care levels, and identify predictors of death at hospital and potentially burdensome transitions; (2) Methods: a retrospective after-death study was performed, covering 18 months prior to the emergence of the COVID-19 pandemic, in a nationwide sample of Portuguese NH with 614 residents; (3) Results: 176 deceased patients were included. More than half of NH residents died at hospital. One-third experienced a potentially burdensome care transition in the last 3 days of life, and 48.3% in the last 90 days. Younger age and higher technical staff support were associated with death at hospital and a higher likelihood of burdensome transitions in the last year of life, and Palliative Care team support with less. Advanced Care planning was almost absent; (4) Conclusions: The studied population was frail and old without advance directives in place, and subject to frequent hospitalization and potentially burdensome transitions near the end of life. Unlike other studies, staff provisioning did not improve the outcomes. The results may be related to a low social and professional awareness of Palliative Care and warrant further study.

Communication of the Diagnosis of Spinal Muscular Atrophy in the Views of Patients and Family Members, a Qualitative Analysis.

INTRODUCTION: Communicating the diagnosis of a genetic and neurodegenerative disease, such as spinal muscular atrophy (SMA), requires a transmission centered on the patient and/or the family caregiver, ensuring autonomy to those involved and strengthening the doctor-patient relationship. OBJECTIVE: Analyzing the communication of the SMA diagnosis from the perspective of patients and family members. METHODS: This qualitative study was developed through semi-structured interviews, via teleconsultation. The analysis was developed by systematically condensing the answers and synthesizing them into four thematic axes (clarification of the diagnosis, communication of the prognosis, affective memory related to the event, and advice to physicians). RESULTS AND DISCUSSION: Twenty-nine patients with SMA and 28 family caregivers of people with this condition, from all regions of Brazil, reported that individualized, clear, honest, and welcoming communication, emphasizing positive aspects, in the presence of family members and with the possibility of continuous monitoring, was important to meeting their communication needs. A lack of empathy, monitoring and guidance, and estimating life expectancy resulted in negative experiences. CONCLUSIONS: The communication needs of patients and family members described during the clarification of the diagnosis and prognosis of SMA predominantly involve empathic factors related to the attitude of the attending physician throughout the evolution of the disease. Future research evaluating other neurodegenerative diseases and the development of research protocols are important to improving communication between physicians, patients, and family members.