This project will seek to conduct an international post-bereavement survey of perceptions of quality of patient care and family support in the last days of life and immediately after bereavement. This will enable comparisons between countries and the development of a consistent way of assessing and comparing quality of care on an international basis.
With 2.35 million people dying from cancer in EU-LAC countries every year (2012), ensuring dying cancer patients and their families receive high quality care and support wherever they die, is of paramount importance.
The project will use the ‘Care Of the Dying Evaluation’ (CODETM) postbereavement questionnaire. CODE focuses on the last days of life and immediate bereavement period and seeks the perceptions of bereaved relatives about the quality of patient care and level of family support with the aim of assessing the current quality of care. The CODE questionnaire was developed by Dr Catriona Mayland, Professor John Ellershaw and the research group at the Marie Curie Palliative Care Institute Liverpool at the University of Liverpool and has been assessed for validity and reliability.
Led by Professor Dagny Faksvåg Haugen, University of Bergen, Norway, the project is a collaboration between an international group of researchers and clinicians from seven EU-LAC countries and the objectives of the project are completely in line with Topic 7 HEALTH: Cancer of the 2nd ERANetLAC Joint Call on Research and Innovation: To improve the quality of care and quality of life of dying cancer patients.
Members of this newly formed group have already collaborated for several years with well-established links through the International OPCARE9 Collaboration (2008-2011), a European Union 7th Framework Co-ordination & Support Action Grant project that systematically investigated current practice across a range of healthcare environments and diverse cultures. Following the completion of OPCARE9, the group of international experts and researchers continued to work together to bring renewed focus on the international evidence and the next steps in improving care for dying patients and their families. In 2014, this collaboration was formalised by the creation of the International Collaborative for Best Care for the Dying Person, which now involves participants from 21 countries globally. The vision of the collaborative is ‘for a world where all people experience a good death as an integral part of their individual life, supported by the very best personalised care’.
OPCARE9 identified four key areas for the development of the evidence base to improve care for dying patients: timely assessment in the last months of life; appropriate use of treatments and medications; communication, and carer support. Three of these key areas will be addressed in the ERANet-LAC CODE project, and the last - timely assessment - is implicit in several of the questionnaire items.
The CODE questionnaire includes the following topics: the care received by the patient and the relatives from the nurses and doctors; the control of pain and other symptoms, including the appropriate use of treatments and medications from a relative perspective; communication with the healthcare team; the emotional and spiritual support provided by the healthcare team; the circumstances surrounding the death, including carer support.
Findings from the international survey will be utilised to improve clinical practice and quality of care. An international report will be produced and shared with healthcare professionals and the public, which will include assessment of the current quality of care, guidance on how results from CODE surveys can be used to improve quality of life for dying cancer patients.
A key output of the project will be the extension of the CODETM and web based i-CODETM tools, which have so far been used only in the United Kingdom for use on an international basis.