iLIVE

ABSTRACT

Every year around 4 million people die in the EU as a result of chronic disease and illness. Many will die in pain or distress, die alone, and die without appropriate health or social care. How we care for the dying is perhaps the most pressing personal, social and public health issue of the 21st century.

To address this problem, the iLIVE project will demonstrate the effectiveness and cost-effectiveness of two innovative interventions in end-of-life care. Its objective is to develop and evaluate:

• a digital clinical tool to optimize medication management to relieve symptoms that occur at the end of life
• an international volunteer programme to support patients and their families, dying in the hospital

iLIVE will also provide in-depth understanding of the concerns, expectations and preferences of dying patients and their caregivers and deliver the first Core Outcome Set for care of the dying.

To realise this, we will perform a 10-country prospective cohort study of 2000 patients with a life expectancy of six months or less, across different settings, diagnoses, ages, genders, socio-economic and religious groups. The cohort study embeds two controlled clinical trials.

iLIVE is initiated by the ‘International Collaborative for Best Care of the Dying Person’, with worldwide membership. All iLIVE partners have direct access to care of dying patients and hold strategic posts in highly influential national and international bodies linking to policy and strategic decision making. iLIVE will deliver a set of tools and training programmes that are adaptive to different working contexts and informed by dying patients and their caregivers. With an extensive dissemination strategy, iLIVE will significantly contribute to reducing the suffering and isolation of dying patients and their families, improve clinical guidelines, and decrease societal and economic burdens around care for the dying in Europe and beyond.