Living well, dying well. A research programme to support living until the end

Project Information

iLIVE

Grant agreement ID: 825731

DOI

10.3030/825731

Project closed

EC signature date 10 December 2018

Start date 1 January 2019

End date 31 December 2023

Funded under

• SOCIETAL CHALLENGES - Health, demographic change and well-being

Total cost

€ 4 108 817,50

EU contribution

€ 4 017 817,50

Coordinated by

ERASMUS UNIVERSITAIR MEDISCH CENTRUM ROTTERDAM
Netherlands

Periodic Reporting for period 4 - iLIVE (Living well, dying well. A research programme to support living until the end)

Reporting period: 2023-01-01 to 2023-12-31

Summary of the context and overall objectives of the project

An excess of 5 million people die in the EU each year, with 77% of deaths resulting from chronic disease and illness. Dying from chronic illness typically involves a period of declining health, deteriorating functioning and increasing symptom load. The imminence of death is often not recognised or acknowledged in patients with an advancing chronic illness, due to an omnipresent focus on diagnosis, therapy and cure. As a result of a lack of acknowledgement of the needs of the imminently dying, many patients die in distress, with unresolved issues and insufficiently controlled symptoms, and with family often feeling unsupported at this vulnerable time in their lives.

The overall objective of the iLIVE project is to contribute to high-quality personalised care at the end of life by:
• Providing in-depth understanding of the concerns, expectations and preferences of dying patients and their formal and informal caregivers
• Developing and evaluating a digital tool to support clinicians in optimizing individualised medication management for patients who are in the last months of life
• Developing and evaluating an international volunteer training programme to support patients dying in the hospital and their families
• Establishing a Core Outcome Set (COS) for care of dying patients and develop methods for international benchmarking
• Enhancing the engagement of the community at large with the reality of death and dying

We conducted an 11-country prospective cohort study among patients in the last phase of life. Embedded in this cohort study, we performed two studies to develop and evaluate a digital clinical tool to optimise medication management and an international volunteer programme to support patients dying in the hospital.

Work performed from the beginning of the project to the end of the period covered by the report and main results achieved so far

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.

Progress beyond the state of the art and expected potential impact (including the socio-economic impact and the wider societal implications of the project so far)

The iLIVE project provided insight into 21st century experiences of dying patients and their formal and informal caregivers. Such insight is crucial to be able to provide the personalised care that is needed in the last phase of life. A key finding was that in all countries the majority of patients in the last phase of life and their relatives would like death and dying to be more openly discussed in society, urging healthcare providers to communicate openly, sensitively, and consistently about prospects and care options for serious illness.

Review and discussion of appropriate medication is one of the key clinical issues in improving care of dying patients. The iLIVE project delivered an internationally evaluated digital clinical tool to optimise medication management in the last phase of life. The tool provides automated expert-based recommendations and also provides an opportunity for physicians to engage in urgently needed conversations about the end of life with patients and their families.

Enhanced social support at the end of life has been shown to have a ‘stress-buffering’ effect through social companionship and connection to a community. Volunteer services providing social support can optimise and enhance the care of patients dying in the hospital. The iLIVE project delivered an internationally evaluated compassion-based volunteer training programme for dying patients and their family within the hospital setting.

We evaluated the cost impact of the medication tool and provided the first comprehensive and reliable estimates of the costs of setting up hospital-based end-of-life care volunteer services in different countries. Our economic evaluations and the challenges encountered provide important lessons for future economic evaluations in palliative and end-of-life care.

Continuous quality assessment of end-of-life care using quality indicators that are endorsed both by patients and healthcare professionals is one of the key assets to ensure high-quality sustainable end-of-life care in all settings. We developed the first internationally validated COS for care of dying patients, independent of their diagnosis, that can be used in research and for quality assessment in clinical care.

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