What are the triggers for palliative care referral in burn intensive care units? Results from a qualitative study based on healthcare professionals' views, clinical experiences and practices.

BACKGROUND: Burns are a global public health problem, accounting for around 300,000 deaths annually. Burns have significant consequences for patients, families, healthcare teams and systems. Evidence suggests that the integration of palliative care in burn intensive care units improves patients' comfort, decision-making processes and family care. Research is needed on how to optimise palliative care referrals. AIM: To identify triggers for palliative care referral in critically burned patients based on professionals' views, experiences and practices. DESIGN: Qualitative study using in-depth interviews. SETTING/PARTICIPANTS: All five Burn Intensive Care Units reference centres across Portugal were invited; three participated. Inclusion criteria: Professionals with experience/working in these settings. A total of 15 professionals (12 nurses and 3 physicians) participated. Reflexive thematic analysis was performed. RESULTS: Three main triggers for palliative care referral were identified: (i) Burn severity and extension, (ii) Co-morbidities and (iii) Multiorgan failure. Other triggers were also generated: (i) Rehabilitative palliative care related to patients' suffering and changes in body image, (ii) Family suffering and/or dysfunctional and complex family processes, (iii) Long stay in the burn intensive care unit and (iv) Uncontrolled pain. CONCLUSIONS: This study identifies triggers for palliative care in burn intensive care units based on professionals' views, clinical experiences and practices. The systematisation and use of triggers could help streamline referral pathways and strengthen the integration of palliative care in burn intensive care units. Research is needed on the use of these triggers in clinical practice to enhance decision-making processes, early and high-quality integrated palliative care and proportionate patient and family centred care.

A bioethical perspective on the meanings behind a wish to hasten death: a meta-ethnographic review.

BACKGROUND: The expressions of a "wish to hasten death" or "wish to die" raise ethical concerns and challenges. These expressions are related to ethical principles intertwined within the field of medical ethics, particularly in end-of-life care. Although some reviews were conducted about this topic, none of them provides an in-depth analysis of the meanings behind the "wish to hasten death/die" based specifically on the ethical principles of autonomy, dignity, and vulnerability. The aim of this review is to understand if and how the meanings behind the "wish to hasten death/die" relate to and are interpreted in light of ethical principles in palliative care. METHODS: We conducted a meta-ethnographic review according to the PRISMA guidelines and aligned with Noblit and Hare's framework. Searches were performed in three databases, Web of Science, PubMed, CINAHL, with no time restrictions. Original qualitative studies exploring the meanings given by patients, family caregivers and healthcare professionals in any context of palliative and end-of-life care were included. A narrative synthesis was undertaken. PROSPERO registration CRD42023360330. RESULTS: Out of 893 retrieved articles, 26 were included in the analysis, accounting for the meanings of a total of 2,398 participants. Several factors and meanings associated with the "wish to hasten death" and/or "wish to die" were identified and are mainly of a psychosocial and spiritual nature. The ethical principles of autonomy and dignity were the ones mostly associated with the "wish to hasten death". Ethical principles were essentially inferred from the content of included articles, although not explicitly stated as bioethical principles. CONCLUSIONS: This meta-ethnographic review shows a reduced number of qualitative studies on the "wish to hasten death" and/or "wish to die" explicitly stating ethical principles. This suggests a lack of bioethical reflection and reasoning in the empirical end-of-life literature and a lack of embedded ethics in clinical practice. There is a need for healthcare professionals to address these topics compassionately and ethically, taking into account the unique perspectives of patients and family members. More qualitative studies on the meanings behind a wish to hasten death, their ethical contours, ethical reasoning, and implications for clinical practice are needed.

What do we know about experiencing end-of-life in burn intensive care units? A scoping review.

OBJECTIVES: The aim of this article is to review and synthesize the evidence on end-of-life in burn intensive care units. METHODS: Systematic scoping review: Preferred Reporting Items for Systemic Reviews extension for Scoping Reviews was used as a reporting guideline. Searches were performed in 3 databases, with no time restriction and up to September 2021. RESULTS: A total of 16,287 documents were identified; 18 were selected for analysis and synthesis. Three key themes emerged: (i) characteristics of the end-of-life in burn intensive care units, including end-of-life decisions, decision-making processes, causes, and trajectories of death; (ii) symptom control at the end-of-life in burn intensive care units focusing on patients' comfort; and (iii) concepts, models, and designs of the care provided to burned patients at the end-of-life, mainly care approaches, provision of care, and palliative care. SIGNIFICANCE OF RESULTS: End-of-life care is a major step in the care provided to critically ill burned patients. Dying and death in burn intensive care units are often preceded by end-of-life decisions, namely forgoing treatment and do-not-attempt to resuscitate. Different dying trajectories were described, suggesting the possibility to develop further studies to identify triggers for palliative care referral. Symptom control was not described in detail. Palliative care was rarely involved in end-of-life care for these patients. This review highlights the need for early and high-quality palliative and end-of-life care in the trajectories of critically ill burned patients, leading to an improved perception of end-of-life in burn intensive care units. Further research is needed to study the best way to provide optimal end-of-life care and foster integrated palliative care in burn intensive care units.

Nursing education on palliative care across Europe: Results and recommendations from the EAPC Taskforce on preparation for practice in palliative care nursing across the EU based on an online-survey and country reports.

BACKGROUND: Nurses are the largest regulated group of healthcare professionals involved in palliative care. In 2004, a taskforce of the European Association for Palliative Care (EAPC) launched the 'Guide for development of palliative nurse education in Europe' (hereinafter, the EAPC 2004 Guide). No systematic evaluation of its impact in the development of palliative care education was undertaken. AIMS: To describe current undergraduate and postgraduate nursing education across Europe; to identify the roles that nurses with different palliative care educational levels have in palliative care; and to assess the uptake of the EAPC 2004 Guide in the development of palliative care nursing in Europe. DESIGN: Descriptive research involving an online survey among nursing experts, and the consultation of national representatives. SETTING/PARTICIPANTS: A total of 135 nurses (52% response rate) from 25 countries completed the online survey; representatives from 16 countries were consulted. RESULTS: In 14 (56%) countries, palliative care was not identified as a mandatory subject within undergraduate nursing education. The EAPC 2004 Guide is widely known and was/is being used in many countries to promote palliative care nursing education. Large variations were found across and within country responses. CONCLUSIONS: Palliative care nursing education varies largely in Europe. The wide awareness and use of the EAPC 2004 Guide show how policy measures can influence the development of palliative care education. Recommendations are built and focus on both fostering the use of this guide and implementing policy measures to ensure that palliative care nursing is recognised and certified as a specialty in all European countries.

Nursing competencies across different levels of palliative care provision: A systematic integrative review with thematic synthesis.

BACKGROUND: Palliative care exists in diverse healthcare settings. Nurses play a crucial role in its provision. Different levels of palliative care provision and education have been recognized in the literature. Therefore, nurses need a set of various competencies to provide high-quality palliative care. AIMS: To systematically synthesize the empirical evidence of (1) nursing competencies needed in palliative care and (2) whether these competencies differ across the level of palliative care. DESIGN: Systematic integrative review with thematic synthesis. Prospero: CRD42018114869. DATA SOURCES: CINAHL, PubMed, Academic Search Premier, Scopus and Medic databases. Studies on nursing competencies linked to palliative care reported in English, Swedish, Finnish, Spanish, Portuguese or German were considered. Search terms: 'palliative care or hospice care or end-of-life care', 'competency or professional competence or skills' and 'nursing'. Articles were independently screened and reviewed by two researchers. Quality appraisal was conducted following Hawker's criteria. RESULTS: A total of 7454 articles were retrieved, 21 articles were included in the analysis. Six diverse nursing competencies dimensions, namely leadership, communication, collaboration, clinical, ethico-legal and psycho-social and spiritual were identified. The reports rarely defined the level of palliative care and covered a wide array of healthcare settings. CONCLUSION: Nurses need a wide range of competencies to provide quality palliative care. Few studies focused on which competencies are relevant to a specific level of palliative care. Further research is needed to systematize the nursing competencies and define which nursing competencies are central for different levels of palliative care to enhance palliative care development, education and practice.

Palliative care nursing involvement in end-of-life decision-making: Qualitative secondary analysis.

BACKGROUND: Nurses are the largest professional group in healthcare and those who make more decisions. In 2014, the Committee on Bioethics of the Council of Europe launched the "Guide on the decision-making process regarding medical treatment in end-of-life situations" (hereinafter, Guide), aiming at improving decision-making processes and empowering professionals in making end-of-life decisions. The Guide does not mention nurses explicitly. OBJECTIVES: To analyze the ethical principles most valued by nurses working in palliative care when making end-of-life decisions and investigate if they are consistent with the framework and recommendations of the Guide; to identify what disputed/controversial issues are more frequent in these nurses' current end-of-life care practices. DESIGN: Qualitative secondary analysis. PARTICIPANTS/CONTEXT: Three qualitative datasets including 32 interviews from previous studies with nurses working in palliative care in Portugal. ETHICAL CONSIDERATION: Ethical approval was obtained from the Ethics Research Lab of the Instituto de Bioética (Ethics Research Lab of the Institute of Bioethics) (Ref.04.2015). Ethical procedures are thoroughly described. FINDINGS: All participant nurses referred to autonomy as an ethical principle paramount in end-of-life decision-making. They were commonly involved in end-of-life decision-making. Palliative sedation and communication were the most mentioned disputed/controversial issues. DISCUSSION: Autonomy was highly valued in end-of-life care and decision-making. Nurses expressed major concerns in assessing patients' preferences, wishes, and promoting advance care planning. Nurses working in palliative care in Portugal were highly involved in end-of-life decision-making. These processes embraced a collective, inclusive approach. Palliative sedation was the most mentioned disputed issue, which is aligned with previous findings. Communication also emerged as a sensitive ethical issue; it is surprising, however, that only three nurses referred to it. CONCLUSION: While the Guide does not explicitly mention nurses in its content, this study shows that nurses working in palliative care in Portugal are involved in these processes. Further research is needed on nurses' involvement and practices in end-of-life decision-making.

Ethical challenges of outcome measurement in palliative care clinical practice: a systematic review of systematic reviews.

Several outcome measures have been systematically implemented to be used in palliative care. However, routine use in clinical practice is not without ethical challenges, which are not commonly addressed. The objectives of this study are therefore (I) to identify the ethical challenges/issues of outcome measurement in palliative care and (II) to understand how these ethical challenges/issues are addressed in palliative care clinical practice. The study consisted of a systematic review of systematic reviews, which is a type of review that brings together a summary of reviews in one place. We searched PubMed, Web of Science, EBSCOhost searching CINAHL Complete, MEDLINE Complete, Nursing & Allied Health Collection: Comprehensive, Cochrane Central Register of Controlled Trials, Cochrane Database of Systematic Reviews, Cochrane Methodology Register, Library, Information Science & Technology Abstracts, MedicLatina, from inception to January 2018. Out of 159 articles screened, only two [2] articles were included for analysis. The main ethical challenge/issue identified in these two reviews was cognitive impairment, particularly in patients with dementia. This challenge was addressed via proxy (family carers or health professionals) reporting outcome measurement. Ethical challenges/issues are poorly addressed in the existing systematic reviews about outcome measurement in palliative care clinical practice. Only two systematic reviews addressed ethical challenges/issues, namely cognitive impairment, particularly in persons with dementia. Further research is needed on this subject and to foster the use of outcome measurement among this vulnerable group of patients.

Towards a public health approach for palliative care: an action-research study focused on engaging a local community and educating teenagers.

BACKGROUND: Education sessions about palliative care among teenagers are uncommon in developed countries. However, very little is known either about the impact of this type of intervention or about how this age-group perceives its impact. The purpose of this study was therefore to (i) implement an education program about palliative care among teenagers and (ii) to investigate the impact of the program on the participants. METHODS: An action-research study was conducted at a local community parish in Portugal in November 2015. An education programme was purposively built about palliative care, using active educational strategies adapted for teenagers. Quantitative and qualitative techniques and instruments were used for data collection: questionnaire; reflective diaries; interviews and written testimony. The program had three stages: preparation; intervention; and evaluation. Qualitative data were analysed using thematic content analysis; quantitative data were analysed descriptively. RESULTS: 69 people (47 teenagers) participated in the education program. Findings show that the education program contributed to creating awareness about palliative care. Both the teenagers and other participants assessed the education program positively. At the end of the program, teenagers had a constructive message about palliative care. CONCLUSIONS: The education-intervention contributed to create awareness about palliative care among the participant teenagers, who ended the program with a positive message about palliative care. Based on our findings, the following policy implications can be drawn: (1) Further research is needed to evaluate the effect of education programs about palliative care among younger age groups (teenagers and children), particularly in relation to the changing of attitudes toward palliative care. (2) Education about palliative care should be promoted to local communities, involving all age groups, to foster involvement, participation and empowerment. (3) Compassionate communities should be promoted to enhance the health and wellbeing of all citizens at the end of their life.

End-of-Life Decision Making in Palliative Care and Recommendations of the Council of Europe: Qualitative Secondary Analysis of Interviews and Observation Field Notes.

BACKGROUND: End-of-life decisions (ELDs) are embedded in clinical, sociocultural, political, economic, and ethical concerns. In 2014, the Council of Europe (CoE) through its Committee on Bioethics launched the "Guide on the decision-making process regarding medical treatment in end-of-life situations," aiming at improving decision-making processes and empowering professionals in making ELDs. OBJECTIVE: To analyze if end-of-life decision making in palliative care (PC) is consistent with this Guide and to identify if disputed/controversial issues are part of current ELDs. DESIGN: Qualitative secondary analysis. SETTING/SUBJECTS: Four qualitative datasets, including 44 interviews and 9 team observation field notes from previous studies with PC teams/professionals in Portugal. MEASUREMENTS: An analysis grid based on the abovementioned guide was created considering three dimensions: ethical and legal frameworks, decision-making process, and disputed/controversial issues. RESULTS: The majority of the professionals considered the ethical principle of autonomy paramount in end-of-life decision making. Justice and beneficence/nonmaleficence were also valued. Although not mentioned in the Guide, the professionals also considered other ethical principles when making ELDs, namely, responsibility, integrity, and dignity. Most of the interviewees and field notes referred to the collective interprofessional dimension of the decision-making process. Palliative sedation and the wish to hasten death were the most mentioned disputed/controversial issues. The nature, limitations, and benefits of qualitative secondary analysis are discussed. CONCLUSIONS: End-of-life decision-making processes made by Portuguese PC teams seem to be consistent with the guidelines of the CoE. Further research is needed about disputed/controversial issues and the actual use, effectiveness, and impact of ethical guidelines for end-of-life decision making on professionals' empowerment and for all parties involved.

Ethical decision making in pain management: a conceptual framework.

INTRODUCTION: The practice and study of pain management pose myriad ethical challenges. There is a consensual opinion that adequate management of pain is a medical obligation rooted in classical Greek practice. However, there is evidence that patients often suffer from uncontrolled and unnecessary pain. This is inconsistent with the leges artis, and its practical implications merit a bioethical analysis. Several factors have been identified as causes of uncontrolled and unnecessary pain, which deprive patients from receiving appropriate treatments that theoretically they have the right to access. Important factors include (with considerable regional, financial, and cultural differences) the following: 1) failure to identify pain as a priority in patient care; 2) failure to establish an adequate physician-patient relationship; 3) insufficient knowledge regarding adequate prescription of analgesics; 4) conflicting notions associated with drug-induced risk of tolerance and fear of addiction; 5) concerns regarding "last-ditch" treatments of severe pain; and 6) failure to be accountable and equitable. OBJECTIVE: The aim of this article was to establish that bioethics can serve as a framework for addressing these challenging issues and, from theoretical to practical approaches, bioethical reflection can contextualize the problem of unrelieved pain. METHODS: This article is organized into three parts. First, we illustrate that pain management and its undertreatment are indeed ethical issues. The second part describes possible ethical frameworks that can be combined and integrated to better define the ethical issues in pain management. Finally, we discuss possible directions forward to improve ethical decision making in pain management. DISCUSSION: We argue that 1) the treatment of pain is an ethical obligation, 2) health science schools, especially medical training institutions, have the duty to teach pain management in a comprehensive fashion, and 3) regulatory measures, which prevent patients from access to opioid treatment as indicated in their cases, are unethical and should be reconsidered. CONCLUSION: Developing an ethical framework for pain management will result in enhanced quality of care, linking the epistemic domains of pain management to their anthropological foundations, thereby making them ethically sound.

Toward a bioethical framework for antibiotic use, antimicrobial resistance and for empirically designing ethically robust strategies to protect human health: a research protocol.

Introduction Antimicrobial resistance (AMR) is a challenging global and public health issue, raising bioethical challenges, considerations and strategies. Objectives This research protocol presents a conceptual model leading to formulating an empirically based bioethics framework for antibiotic use, AMR and designing ethically robust strategies to protect human health. Methods Mixed methods research will be used and operationalized into five substudies. The bioethical framework will encompass and integrate two theoretical models: global bioethics and ethical decision-making. Results Being a study protocol, this article reports on planned and ongoing research. Conclusions Based on data collection, future findings and using a comprehensive, integrative, evidence-based approach, a step-by-step bioethical framework will be developed for (i) responsible use of antibiotics in healthcare and (ii) design of strategies to decrease AMR. This will entail the analysis and interpretation of approaches from several bioethical theories, including deontological and consequentialist approaches, and the implications of uncertainty to these approaches.

Compared to Palliative Care, Working in Intensive Care More than Doubles the Chances of Burnout: Results from a Nationwide Comparative Study.

INTRODUCTION: Professionals working in intensive and palliative care units, hence caring for patients at the end-of-life, are at risk of developing burnout. Workplace conditions are determinant factors to develop this syndrome among professionals providing end-of-life care. OBJECTIVES: To identify and compare burnout levels between professionals working in intensive and palliative care units; and to assess which workplace experiences are associated with burnout. METHODS: A nationwide, multicentre quantitative comparative survey study was conducted in Portugal using the following instruments: Maslach Burnout Inventory-Human Services Survey, Questionnaire of workplace experiences and ethical decisions, and Questionnaire of socio-demographic and professional characteristics. A total of 355 professionals from 10 intensive care and 9 palliative care units participated in the survey. A series of univariate and multivariate logistic regression analyses were performed; odds ratio sidelong with 95% confidence intervals were calculated. RESULTS: 27% of the professionals exhibited burnout. This was more frequent in intensive care units (OR = 2.525, 95% CI: 1.025-6.221, p = .006). Univariate regression analyses showed that higher burnout levels were significantly associated with conflicts, decisions to withhold/withdraw treatment, and implementing palliative sedation. When controlling for socio-demographic and educational characteristics, and setting (intensive care units versus palliative care units), higher burnout levels were significantly and positively associated with experiencing conflicts in the workplace. Having post-graduate education in intensive/palliative care was significantly but inversely associated to higher burnout levels. CONCLUSIONS: Compared to palliative care, working in intensive care units more than doubled the likelihood of exhibiting burnout. Experiencing conflicts (e.g., with patients and/or families, intra and/or inter-teams) was the most significant determinant of burnout and having post-graduate education in intensive/palliative care protected professionals from developing this syndrome. This highlights the need for promoting empowering workplace conditions, such as team empowerment and conflict management. Moreover, findings suggest the need for implementing quality improvement strategies and organizational redesign strategies aimed at integrating the philosophy, principles and practices of palliative care in intensive care units.

Palliative care nursing education features more prominently in 2015 than 2005: Results from a nationwide survey and qualitative analysis of curricula.

BACKGROUND: Making palliative care accessible to all citizens who are in need of this type of care requires effective policies and education. Moreover, healthcare professionals have an ethical and legal responsibility to ensure quality palliative care. Nevertheless, palliative care has had traditionally a limited emphasis in healthcare professionals' undergraduate education. AIM: To study the current status of palliative care education in nursing undergraduate curricula and compare 2005 and 2015 findings. DESIGN: An online survey was sent to all state schools providing nursing undergraduate education in Portugal (N = 21). The survey assessed if and how palliative care was included in the curricula, and whether or not national and international recommendations for palliative care nursing education were followed. Further analysis included the content of available curricula/syllabi. SETTING/PARTICIPANTS: A total of 19 schools completed the survey (90% of response rate). These institutions are geographically dispersed and representative of state nursing educational institutions in Portugal. RESULTS: In 2015, all participant schools integrated palliative care in their curricula; nine schools had palliative care as an independent curricular unit (an 800% increase compared to 2005). While in 2005, only 14 out of 23 (61%) schools included palliative care explicitly in their curricula; in 2015, all 19 participant schools did so. National and international recommendations were followed. CONCLUSION: The inclusion of palliative care within nursing undergraduate curricula strongly increased from 2005 to 2015. Further research is needed to understand the contribution of education in the access, care provision, quality and development of palliative care in this country.

Ethical Decisions in Palliative Care: Interprofessional Relations as a Burnout Protective Factor? Results From a Mixed-Methods Multicenter Study in Portugal.

BACKGROUND: Ethical decisions are part of contemporary practices in palliative care. The need of making such decisions is associated to higher burnout levels and other work related problems among healthcare professionals. AIMS: As part of the project entitled "Decisions in End-of-Life Care in Spain and Portugal" (DELiCaSP), this study aims to (i) identify the most common ethical decisions made by Portuguese palliative care teams and (ii) understand how the making of such decisions relates to burnout. METHODS: A mixed methods study was conducted with 9 palliative care teams, using (i) questionnaires of socio-demographic and professional variables, work-related experiences, (ii) the Maslach Burnout Inventory, (iii) interviews and (iv) observations. These teams were geographically dispersed across the country, covering the North, Centrum and South regions, and heterogeneous: Five palliative care units for inpatients; three home care teams; and one hospital support team. A total of 20 interviews and 240 hours of observations were completed until reaching saturation. RESULTS: The most common ethical decisions were related to communication issues (information disclosure of the diagnosis and prognosis), forgoing treatment and sedation. Although perceived as stressful, emotionally demanding and challenging, ethical decisions were not significantly associated with burnout. CONCLUSIONS: Making ethical decisions is not associated with higher burnout levels among professionals working in Portuguese palliative care teams. This can be explained by the interprofessional decision-making process followed by these teams, which promotes a sense of shared-decision and team-based empowerment; and by the advanced level of interdisciplinary education in palliative care that these professionals have.

[An extended version of the Font-Roja job satisfaction questionnaire]. / Una propuesta destinada a complementar el cuestionario Font-Roja de satisfacción laboral.

INTRODUCTION: Several studies have shown the need to include the physical work environment among the dimensions included in job satisfaction evaluation. However, this dimension was not included in the Font-Roja questionnaire. The present study introduces two items exploring this dimension and adheres to the hypothesis that physical work environment has a significant impact on job satisfaction evaluation. METHOD: A total of 227 geriatric workers participated in this study. The participants completed the Font-Roja job satisfaction questionnaire with 2 additional items exploring the physical work environment. Factor analysis and principal components analysis with rotation varimax were used to determine the diverse components of job satisfaction. To determine the coherence of the scales and the consistency of the added items, Cronbach's a was used. These methods were applied to both questionnaires, the classical 24-item questionnaire and the extended 26-item questionnaire. RESULTS: The classical Font-Roja questionnaire was composed of 8 factors, explaining 60.02% of the variance. The extended questionnaire was structured into 9 factors, explaining 61.81% of the variance. The new factor was composed of both added items. The internal consistency of the Font-Roja classical scale was alpha = 0.773 and that of the extended scale was alpha = 0.791. DISCUSSION: The extended scale is superior to the classical scale. The results obtained seem to support the hypothesis that, for analysis of job satisfaction, the instruments used should contain items on the physical work environment.

Polarization of perceived Procedural Justice.

This study examined polarization of perceptions of Procedural Justice. Two polarization mechanisms are examined, Persuasive Arguments and Social Comparisons. Participants were students enrolled in a first-year introductory business class. There were 216 participants in the Persuasive Arguments study, 429 in the Social Comparisons study. The average age of all participants was 22.3 yr. (SD = 2.1); 56% were women. Fields of study represented were business, engineering, information technology, and sports. Analysis showed under conditions of low Procedural Justice, polarization effects were only found with the Persuasive Arguments mechanism. Under conditions of high Procedural Justice, polarization effects were only found with Social Comparisons. Implications for group polarization and Procedural Justice theories are considered.