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- Palliative care nursing education across the EU: results from an international survey studyPublication . Pereira, S. Martins; Hernández-Marrero, P.; Capelas, M. L.; Pasman, H. R.; Larkin, P.; Franck, A.
- How to optimize Informed consent in patients with dementia?Publication . Hernández-Marrero, P.; Pereira, S. Martins
- Ethical decision making in pain management: a conceptual frameworkPublication . Carvalho, A. S.; Martins Pereira, S.; Jácomo, A.; Magalhães, S.; Araújo, Joana; Hernández-Marrero, P.; Gomes, Carlos Costa; Schatman, M. E.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 druginduced 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.
- Integrating palliative care and intensive care: different concepts and organizational models based on a mixed-methods study on professionals’ perspectivesPublication . Pereira, S. Martins; Teixeira, C. M.; Carvalho, A. S.; Hernández-Marrero, P.
- Nursing and medical education through multidisciplinary cooperation and working life collaborationPublication . Hökkä, M.; Pereira, S. Martins; Kyngäs, H.; Pölkki, T.; Hernández-Marrero, P.
- Do adult persons with chronic psychiatric conditions receive fair access to specialist palliative care? Results from a systematic reviewPublication . Pereira, S. Martins; Antunes, B.; Azenha, S.; Hernández-Marrero, P.
- Informed consent in patients with dementia: a mixed-methods study on palliative care professionals’ viewsPublication . Hernández-Marrero, P.; Pereira, S. Martins
- The ethical soundness and relevance of qualitative secondary analysis in palliative care researchPublication . Pereira, S. Martins; Fradique, E.; Hernández-Marrero, P.Background: Qualitative secondary data analysis consists in the use of existing qualitative data to find answers to research questions that differ from the ones asked in the original research. In palliative care research, the use of qualitative secondary data analysis has been increasing over the last decade. Nevertheless, this research approach is not without methodological or ethical challenges, which need to be addressed in order to ensure its ethical soundness. Aim: To assess and discuss the ethical issues, procedures, soundness and relevance of performing qualitative secondary data analysis in palliative care research. Methods: Systematic review of empirical studies in palliative care, following PRISMA 2009, to identify the main ethical challenges, procedures, soundness and relevance of the secondary use of existing qualitative data. Searches were performed in five databases (PubMed, Web of Science, CINHAHL Complete, Medline e EBSCO Host) in January 2017 and updated in April 2019. Inclusion criteria were: empirical studies conducted in palliative care reporting the use of qualitative secondary data, in English and Portuguese, with full text and references available. Data were analyzed using both inductive and deductive content analysis. Qualitative assessment of included studies and data extraction were performed independently by two members of the research team using proper tools. Results, Outcomes and Implications: A total of 98 results were returned from initial searches, of which 23 were included in the synthesis. The main ethical issues identified in these articles were: (1) autonomy and informed consent for the reuse of data from a previously conducted original study; and (2) privacy, confidentiality and pseudo-anonymization of original data and information. Ethical procedures reported in all the studies were (1) ethics approval from an institutional academic ethics review board for performing the secondary analysis of already existing qualitative data and (2) ethics approval from the original studies. Two articles also thoroughly described the ethical soundness and relevance of their qualitative secondary analysis. This was framed referring to the fact that reusing qualitative data in palliative care research contributed to (1) the protection of vulnerable participants of any potential harm or further intrusion and (2) the prevention of participants’ fatigue due to repeated research participation. Conclusions: This systematic review shows that performing qualitative data analysis in palliative care research is ethically sound and relevant. By exploiting the potential of a rich source of qualitative data and information, qualitative secondary analysis embraces an ethical dimension and diminishes the risk and burden of research fatigue. To be so, palliative care researchers need to provide detailed information on all the ethical procedures and safeguards implemented in their secondary studies.
- Anticipatory medication in home palliative care: a systematic review of existing practices, challenges and safeguardsPublication . Hernández-Marrero, P.; Pereira, S. Martins