The iLIVE research project ambitions to impact on the experience of dying at clinical, public health and societal level, with people continuing to live until they die, “live well, die well”.
10 February, 2019 Rotterdam
On the 10th of February the iLive project was launched in Rotterdam, where during two days, more than 30 clinicians and researchers from 13 different countries, worked together to initiate this venture.
iLIVE is a 4-year EU funded research project involving 14 project partners from private and public clinical and academic settings, that will develop novel, evidence–based and sustainable interventions, to relieve the symptoms and suffering that occur at end of life for patients with advanced chronic illnesses and their families.
iLIVE aims to make an impact on a global basis on the experience of dying, with people continuing to live until they die, “live well, die well”.
About end of life care in advanced chronic illnesses
An excess of 5 million people die in the EU each year, with 77% of deaths resulting from chronic illness. Although a chronic illness is a medical condition, it has a social, psychological, emotional and spiritual, and economic impact on people’s lives. It affects people in different ways.
Dying from a chronic illness involves: a period of declining health, deteriorating functioning and increasing symptom load; the difficulty of recognising the imminence of death due to an omnipresent focus on diagnosis, therapy and cure; prolonged costly medical interventions, aimed at postponing death, until very late in patients’ disease trajectories, without beneficial effects but with a considerable burden for the patient; and individually and as a society, fear to face our mortality, resulting in a ‘conspiracy of silence’ around death and dying.
As a result of a lack of acknowledgement of the needs of the imminently dying, many people die with pain or symptomatic stress, alone, and without structured health or social care.
How we care for the elderly and the dying is perhaps the most pressing personal, social and public health issue of the 21st century.
Palliative Care is aimed at improving the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.
Palliative care not only affects dying patients, but also crucially impacts on their surviving families and social network, who ultimately also have to face their own deaths. Bereavement care is considered an intrinsic part of the care of dying patients.
About the International Collaborative for Best Care for the Dying Person
Established in 2014 by the members of the EU 5th framework project, OPCARE9, the International Collaborative for Best Care for the Dying Person, brings together a group of leading thinkers, practitioners and researchers from 20 countries, that have together developed the ‘International 10/40 Care Model’ which can be implemented in individual regions, states or countries to support the delivery of first-class physical, social, psychological and spiritual care at the end of life.
The iLIVE project is embedded in the work of the International Collaborative for Best Care for the Dying Person, and has been developed by researchers and clinicians from 13 different countries belonging to this international group.
About iLIVE
The 14 participating sites, from a total of 10 European countries together with Australia, New Zealand and Argentina, representing a population of more than 319.000.000 people, have begun to work on this project, leaded by Project Coordinator, Professor Dr. Agnes van der Heide, from Erasmus University Medical Center, Rotterdam, Netherlands, and the Chair of the International Collaborative for Best Care for the Dying person, Professor John Ellershaw from Liverpool University, UK, together with the rest of the participants from:
1. University of Humanistic studies, Netherlands
2. University Clinic of Cologne, Germany
3. University of Lund, Sweden
4. University Clinic of Golnik, Slovenia
5. University of Bern, Switzerland
6. Cudeca Hospice Foundation, Spain
7. Haukeland University Hospital, Bergen, Norway
8. Landspitali, University Hospital, Reykjavik, Island
9. Medical University of Vienna, Austria
10. Pallium Latin-American Civil Association Argentina
11. Arohanui Hospice Service Trust, New Zealand
12. St. Vincent's Hospital, Australia
The iLIVE project key features are:
· An observational study to better understand the experience of death and dying, where cultural, age, gender and socio-economic variety in the cohort participants’ concerns, expectations and preferences will be assessed, as will ethical issues in end of life care practice and research.
· An experimental study on medication management to alleviate physical symptoms in the last phase of life, with the implementation of a digital medication tool.
· A compassion-based international volunteer training programme to address psychosocial and support patients dying in the hospital, and their families.
· An analyse the cost-effectiveness of the digital medication tool to optimise medication management, and the hospital volunteer training programme.
· A sustainable international framework for benchmarking, quality improvement and research by developing a Core Outcome Set for the care of dying patient.
· A plan to inform and engage the community with the reality of death and dying and actively promote citizen input, integrating their ideas and proposals with the main results of the project.
Project Coordinator, Professor Dr. Agnes van der Heide, from Erasmus Universitair Medisch Centrum Rotterdam, stated:
“The way we care for dying patients reflects the kind of society we live in. Adequate and compassionate care of dying patients is fundamental to human dignity and is a basic human right. We want people with advanced illness to live with the best quality of life possible, and to die in peace.
We are delighted to be launching our iLIVE project, which heralds an important millstone: the achievement of a world where all people experience a good death as an integral part of their individual life, supported by the very best personalised care”
Cudeca Hospice Foundation, is participating. Cudeca has been a member of the International Collaborative since its launching in 2014, and is now participating for the first time in a EU research project.
We will actively participate in work package 1, the Cohort study, to better understand the experience of death and dying from the patients and families point of view; and in workpackage 3, the Volunteer study, to address social and emotional needs, and give support to patients dying in the hospital, and their families.
Also we will be the lead of work package 8, which includes the Dissemination and Communication stategy, Public engagement plan and Policy development.
About the EU Framework Programme for Research and Innovation - Horizon 2020
Horizon 2020 is the biggest EU Research and Innovation programme ever with nearly EUR 80 billion of funding available over 7 years (2014 to 2020) - in addition to the private investment that this money will attract. It promises more breakthroughs, discoveries and world-firsts by taking great ideas from the lab to the market. More information can be found at https://ec.europa.eu/programmes/horizon2020/en/what-horizon-2020
The iLIVE project is a 4-year project, 2019-2022, granted by the EUROPEAN COMMISSION with 4 million euros distributed among 12 of the participating sites.
Call: H2020-SC1-BHC-2018-2020, Better health and care, economic growth and sustainable health systems
Topic: SC1-BHC-23-2018, Novel patient-centred approaches for survivorship, palliation and/or end of life care
Grant ID: 825731
Acknowledgement
iLIVE is financed by the European Union under an EU Framework Programme for Research and Innovation - Horizon 2020. Project ID: 825731
Disclaimer
This communication reflects the views of the iLIVE Consortium and neither Horizon2020 nor the European Union is liable for any use that may be made of the information contained herein.
Contact:
Please email: marisamartin@cudeca.org
Cudeca Hospice Foundation
Avda. Cosmos s/n 29631 Benalmadena, Malaga, SPAIN