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- Burnout em médicos e enfermeiros: estudo quantitativo e multicêntrico em unidades de cuidados paliativos em PortugalPublication . Pereira, Sandra Martins; Teixeira, Carla Margarida; Ribeiro, Orquídea; Hernández-Marrero, Pablo; Fonseca, António M.; Carvalho, Ana SofiaTheoretical 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.
- Burnout in end-of-life care: Results from a multicenter comparative study between intensive and palliative care unitsPublication . Pereira, Sandra Martins; Teixeira, Carla Margarida; Hernández-Marrero, Pablo; Carvalho, Ana Sofia
- Towards a public health approach for palliative care: an action-research study focused on engaging a local community and educating teenagersPublication . Pereira, Sandra Martins; Araújo, Joana; Hernández-Marrero, PabloBackground: 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.
- Ethical challenges of outcome measurement in palliative care clinical practice: a systematic review of systematic reviewsPublication . Pereira, Sandra Martins; Hernández-Marrero, PabloSeveral 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
- Do patients, families, and healthcare teams benefit from the integration of palliative care in burn intensive care units? Results from a systematic review with narrative synthesisPublication . Ribeiro, André Filipe; Pereira, Sandra Martins; Gomes, Barbara; Nunes, RuiBackground: Burn units are intensive care facilities specialized in the treatment of patients with severe burns. As burn injuries have a major impact in physical, psychosocial, and spiritual health, palliative care can be a strengthening component of integrated care. Aim: To review and appraise the existing evidence about the integration of palliative care in burn intensive care units with respect to (1) the concept, model and design and (2) the benefits and outcomes of this integration. Design: A systematic review was conducted following PRISMA guidelines. Protocol registered with PROSPERO (CRD42018111676). Data sources: Five electronic databases were searched (PubMed/NLM, Web of Science, MEDLINE/TR, Ovid, and CINAHL/EBSCO) until May 2019. A narrative synthesis of the findings was constructed. Hawker et al.'s tool was used for quality appraisal. Results: A total of 299 articles were identified, of which five were included for analysis involving a total of 7353 individuals. Findings suggest that there may be benefits from integrating palliative care in burn units, specifically in terms of patients' comfort, decision-making processes, and family care. Multidisciplinary teams may experience lower levels of burden as result of integrating palliative care in burn units. Conclusion: This review reflects the challenging setting of burn intensive care units. Evidence from these articles suggests that the integration of palliative care in burn intensive care units improves patients' comfort, decision-making process, and family care. Further research is needed to better understand how the integration of palliative care in burn intensive care units may be fostered and to identify the outcomes of this integration.
- Palliative care nursing involvement in end-of-life decision-making: qualitative secondary analysisPublication . Hernández-Marrero, Pablo; Fradique, Emília; Pereira, Sandra MartinsBackground: 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.
- Informed consent in patients with dementia: a mixed-methods study on palliative care professionals’ viewsPublication . Hernández-Marrero, P.; Pereira, S. Martins
- Nursing competencies across different levels of palliative care provision: a systematic integrative review with thematic synthesisPublication . Hökkä, Minna; Pereira, Sandra; Pölkki, Tarja; Kyngäs, Helvi; Hernández-Marrero, PabloBackground: 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.
- 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 reportsPublication . Pereira, Sandra Martins; Hernández-Marrero, Pablo; Pasman, H.Roeline; Capelas, Manuel Luís; Larkin, Philip; Francke, Anneke LBackground: 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.
- End-of-life decision making in palliative care and recommendations of the council of Europe: qualitative secondary analysis of interviews and observation field notesPublication . Pereira, Sandra Martins; Fradique, Emília; Hernández-Marrero, PabloBackground: 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 bovementioned 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-lif 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.