Integrated care: Transferring, integrating, and evaluating complex and comprehensive palliative care interventions, organizational models, knowledge, philosophy, experiences, and practices across healthcare provision through (bio)ethics empirical research

The research activities to be developed by Dr. Sandra Martins Pereira have the goal of transferring palliative care knowledge, experiences, philosophy, and practices to other areas of healthcare provision. Functions include: (1) planning and development of empirical and theoretical studies, integrated in projects currently underway or to be developed throughout the contract duration; (2) production of scientific papers suitable for publication in indexed peer-reviewed international journals; (3) technical support to research projects developed by members of the research center; (4) submission of projects to national and international applications; (5) science management activities; (6) participation and organization of national and international events of scientific disclosure during the contract period; and (7) supervision of research assistants and academic thesis. This work is being conducted within the CEGE research area of sustainability and ethics, combining and integrating the scientific fields of ethics and bioethics (particularly, bioethics empirical research); health services research; health policy, management and evaluation; management; and health economics, with a main focus on palliative and end-of-life care research. The provision of better palliative and end-of-life care, with particular emphasis on reducing inequalities and strengthening palliative care for all in need, is a unanimous political priority of WHO state members and is critical to some of UN’s development goals. There is evidence of disparities in the access to palliative and end-of-life care, but we lack an integrated view of inequities in accessing effective high-quality care, making ethico-clinical decisions and having in place interventions aimed at decreasing unnecessary suffering and improving outcomes and the wellbeing of people with life-limiting or life-threatening illnesses. The integration of palliative care across healthcare settings (e.g., cancer, critical care, neurology, psychiatry, long-term care, primary care) is associated to improved outcomes for patients, family members, health professionals and teams. There is also evidence on reduced costs related to a decrease in hospital admissions and diagnostic interventions at the end-of-life. However, there seems to be clinical equipoise (uncertainty), justifying further research. The integration and evaluation of complex and comprehensive palliative care across healthcare settings can be framed ethically. This research integrates the core principles of palliative care across healthcare settings, the ethical principles of autonomy, beneficence, non-maleficence, justice, dignity, integrity and vulnerability. Worldwide, organizational initiatives have piloted different dimensions of integration. Yet, little is known on the structure, processes, outcomes and ethical framework supporting this integration. This action aims at building further on these ethical features using bioethics empirical research.

2030 Agenda:
The mission and scientific challenge of this project is to address a gap in health services provision and research, particularly in what refers to ensuring high-quality palliative care. Palliative care is a striking public and global health issue widely recognized by the United Nations (UN). In 2014, a joint UN, World Health Organization and Worldwide Palliative Care Alliance report highlighted that only 1 in 10 people who needed medical care to relieve pain, symptoms and stress of serious illness was receiving it. This calls on countries to include palliative care as an essential component to their health systems. Thus, this action will help to improve access to quality essential healthcare services and decrease suffering. It is aligned with Goals 3 and 10 of the UN 2030 Agenda goals.