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Advance care planning (ACP) is increasingly recognised in the global agenda for dementia care. The European Association for Palliative Care (EAPC) Taskforce on ACP in Dementia aimed to provide recommendations for policy initiatives and future research. We conducted a four-round Delphi study with a 33-country panel of 107 experts between September, 2021, and June, 2022, that was approved by the EAPC Board. Consensus was achieved on 11 recommendations concerning the regulation of advance directives, equity of access, and dementia-inclusive approaches and conversations to express patients values. Identified research gaps included the need for an evidence-based dementia-specific practice model that optimises engagement and communication with people with fluctuating and impaired capacity and their families to support decision making, while also empowering people to adjust their decisions if their goals or preferences change over time. Policy gaps included insufficient health services frameworks for dementia-inclusive practice. The results highlight the need for more evidence and policy development that support inclusive ACP practice models.

INTRODUCTION: Existing advance care planning (ACP) definitional frameworks apply to individuals with decision-making capacity. We aimed to conceptualize ACP for dementia in terms of its definition and issues that deserve particular attention. METHODS: Delphi study with phases: (A) adaptation of a generic ACP framework by a task force of the European Association for Palliative Care (EAPC); (B) four online surveys by 107 experts from 33 countries, September 2021 to June 2022; (C) approval by the EAPC board. RESULTS: ACP in dementia was defined as a communication process adapted to the persons capacity, which includes, and is continued with, family if available. We identified pragmatic boundaries regarding participation and time (i.e., current or end-of-life care). Three interrelated issues that deserve particular attention were capacity, family, and engagement and communication. DISCUSSION: A communication and relationship-centered definitional framework of ACP in dementia evolved through international consensus supporting inclusiveness of persons with dementia and their family. HIGHLIGHTS: This article offers a consensus definitional framework of advance care planning in dementia. The definition covers all stages of capacity and includes family caregivers. Particularly important are (1) capacity, (2) family, (3) engagement, and communication. Fluctuating capacity was visualized in relation to roles and engaging stakeholders.

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. [ABSTRACT FROM AUTHOR]

INTRODUCTION: Existing advance care planning (ACP) definitional frameworks apply to individuals with decision‐making capacity. We aimed to conceptualize ACP for dementia in terms of its definition and issues that deserve particular attention. METHODS: Delphi study with phases: (A) adaptation of a generic ACP framework by a task force of the European Association for Palliative Care (EAPC); (B) four online surveys by 107 experts from 33 countries, September 2021 to June 2022; (C) approval by the EAPC board. RESULTS: ACP in dementia was defined as a communication process adapted to the person's capacity, which includes, and is continued with, family if available. We identified pragmatic boundaries regarding participation and time (i.e., current or end‐of‐life care). Three interrelated issues that deserve particular attention were capacity, family, and engagement and communication. DISCUSSION: A communication and relationship‐centered definitional framework of ACP in dementia evolved through international consensus supporting inclusiveness of persons with dementia and their family. Highlights: This article offers a consensus definitional framework of advance care planning in dementia.The definition covers all stages of capacity and includes family caregivers.Particularly important are (1) capacity, (2) family, (3) engagement, and communication.Fluctuating capacity was visualized in relation to roles and engaging stakeholders. [ABSTRACT FROM AUTHOR]

Background: People with Parkinson's disease has significant and increasing physical, psychosocial and spiritual needs, as well as problems with coordination and continuity of care. Despite the benefits that palliative care could offer, there is no consensus on how it should be delivered. Aim: The aim of this study is to provide a pragmatic overview of the evidence to make clinical recommendations to improve palliative care for people with Parkinson's disease and their caregivers. Design: A systematic review method was adopted to determine the strength of evidence, supported by feedback from an expert panel, to generate the 'do', 'do not do' and 'do not know' recommendations for palliative care. Data sources: Searches were conducted via OVID to access CINAHL, MEDLINE, EMBASE and the Cochrane Library from 01/01/2006 to 31/05/2021. An additional search was conducted in December 2022. The search was limited to articles that included empirical studies of approaches to enabling palliative care. Results: A total of 62 studies met inclusion criteria. There is evidence that education about palliative care and movement disorders is essential. palliative care should be multi-disciplinary, individualised and coordinated. Proactive involvement and support of caregivers throughout the illness is recommended. Limited data provide referral indicators for palliative care integration. Discussions about advance care planning should be held early. Conclusions: Consideration of palliative care integration based on symptom burden and personal preferences, coordination and continuity of care are needed to maintain the quality of life of people with Parkinson's disease and their caregivers. [ABSTRACT FROM AUTHOR]

The article focuses on enhancing international engagement in research submitted to Palliative Medicine. Topics include the importance of broad relevance to diverse worldviews, engagement with international literature, and the need for clear, culturally sensitive communication in order to connect meaningfully with a global audience.

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. [ABSTRACT FROM AUTHOR]

The authors discuss the importance of methodology to palliative care research. The significance of input from various disciplines to high-quality and ethically-sound research is emphasized. They cite the benefit of mixed-methods designs with increased integration of quantitative and qualitative methods. They explain the key role of palliative care research in evidence-based clinical practice, service development, education and policy.

Copyright of Acta Bioéthica is the property of Universidad de Chile, Centro Interdisciplinario de Estudios en Bioetica and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Copyright of Rev Rene is the property of Rev Rene and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Theoretical Framework: Systematic contact with death is considered a risk factor for burnout in health, particularly for doctors and nurses who develop their professional activity in palliative care. Objectives: To study the syndrome of burnout in these professionals in Portugal. Methodology: A multicenter quantitative survey study. Results: Out of 142 professionals, 88 returned the completed questionnaire; of these, only 3% were in burnout and 13% at high risk of developing this syndrome. Professing a religion (p=.005) and having post-graduate education/training in palliative care (p=.011) were significantly and inversely associated with burnout. Conflicts with other professionals (p=.012) were significantly associated with developing this syndrome. Conclusion: Although the percentage of professionals with high levels of burnout in palliative care is low, there are risk factors that can be optimized to promote a higher well-being state among professionals. [ABSTRACT FROM AUTHOR]

Copyright of Revista de Enfermagem Referência is the property of Escola Superior de Enfermagem de Coimbra and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Pressure ulcers are a problem with great relevance for patients who suffer from them and for their relatives. The emotional impact of pressure ulcers is increased by the associated material and non-material costs. Therefore, the aim of this study was to understand the emotional impact of pressure ulcers for patients and families, and also to determine their non-material costs. A qualitative study was developed within a phenomenological approach; content analysis allowed us to identify emotions and feelings, needs, support resources and perceived care provided by nurses. The results highlight the relevance of suffering due to pressure ulcers and their impact on material and non-material costs. The main conclusions underline that suffering related to pressure ulcers needs to be seen against a more global framework of life and disease, with relevant costs both for the patient and for their relatives. In addition, considering that nurses are the health professionals with and the closest contact with both patients and families, the results emphasize the contribution that nurses can give in order to address and help patients and relatives to overcome the suffering that this kind of situation and human experience entails. [ABSTRACT FROM AUTHOR]

Pressure ulcers are a problem with great relevance for patients who suffer from them and for their relatives. The emotional impact of pressure ulcers is increased by the associated material and non-material costs. Therefore, the aim of this study was to understand the emotional impact of pressure ulcers for patients and families, and also to determine their non-material costs. A qualitative study was developed within a phenomenological approach; content analysis allowed us to identify emotions and feelings, needs, support resources and perceived care provided by nurses. The results highlight the relevance of suffering due to pressure ulcers and their impact on material and non-material costs. The main conclusions underline that suffering related to pressure ulcers needs to be seen against a more global framework of life and disease, with relevant costs both for the patient and for their relatives. In addition, considering that nurses are the health professionals with and the closest contact with both patients and families, the results emphasize the contribution that nurses can give in order to address and help patients and relatives to overcome the suffering that this kind of situation and human experience entails. [ABSTRACT FROM AUTHOR]

Introduction: Existing advance care planning (ACP) definitional frameworks apply to individuals with decision-making capacity. We aimed to conceptualize ACP for dementia in terms of its definition and issues that deserve particular attention., Methods: Delphi study with phases: (A) adaptation of a generic ACP framework by a task force of the European Association for Palliative Care (EAPC); (B) four online surveys by 107 experts from 33 countries, September 2021 to June 2022; (C) approval by the EAPC board., Results: ACP in dementia was defined as a communication process adapted to the person's capacity, which includes, and is continued with, family if available. We identified pragmatic boundaries regarding participation and time (i.e., current or end-of-life care). Three interrelated issues that deserve particular attention were capacity, family, and engagement and communication., Discussion: A communication and relationship-centered definitional framework of ACP in dementia evolved through international consensus supporting inclusiveness of persons with dementia and their family., Highlights: This article offers a consensus definitional framework of advance care planning in dementia. The definition covers all stages of capacity and includes family caregivers. Particularly important are (1) capacity, (2) family, (3) engagement, and communication. Fluctuating capacity was visualized in relation to roles and engaging stakeholders., (© 2023 The Authors. Alzheimer's & Dementia published by Wiley Periodicals LLC on behalf of Alzheimer's Association.)