During the first year of the project we prepared protocols, questionnaires, interview guides and the infrastructure for the studies. Patient recruitment was planned to start in March 2020, but had to be postponed due to the worldwide COVID-19 pandemic: the first patient was included in the study in September 2020. In total, we were able to collect information from 1425 patients and 620 relatives.
The majority of participants in the cohort study felt that their quality of life was more important than how long it lasts; that they would like to be with their closest family and friends when they would die; that they wanted to be involved in decision making about their care; and that being helpless and dependent is more fearful than death. A majority also would like death and dying to be more openly discussed in society. A substantial minority of all participants preferred doctors to make all the decisions about their care, felt that spiritual or religious support was important to them, would like treatment to control their pain completely even if it left them muddled; and believed that most people are in pain as death approaches.
International consensus was reached on 32 recommendations to deprescribe various types of medication for patients in the last phase of life. These recommendations were included in a digital tool that alerts physicians on deprescribing options for individual patients and also on options to improve symptom control. In a study with a pre-post intervention design, we assessed the impact of implementation of the CDSS-OPTIMED on patients’ wellbeing and medication use. The results will be published in one or more scientific papers.
We delivered an international training programme for volunteer coordinators and a core curriculum for end-of-life care volunteers. The programme was implemented in hospitals in five iLIVE countries. Quantitative and qualitative data were collected to examine the impact of the services on patient distress and quality of life. The results will be published in one or more scientific papers.
We developed a Core Outcome Set for best care for the dying patient to be used in research and patient care. In doing so, we followed the steps recommended by the Core Outcome Measures in Effectiveness Trials (COMET) initiative, including a systematic literature review, identification of key outcomes for patients and family members in the cohort study, a Delphi procedure to achieve consensus and a final consensus meeting. We also delivered a toolbox for further development of quality indicators for care of the dying.
During the project, we launched a range of initiatives to enhance the awareness and engagement of the community at large with the reality of death and dying, including a literature review on barriers and drivers for public engagement, a public-friendly website, newsletters, short story contests, opinion polls, an analysis of national palliative care implementation strategies, a research conference and a policy summit to share and discuss some important outcomes of the study with policymakers from all involved countries.
