WORK PACKAGE 1

Lead: Erasmus Medical Center (Netherlands)

The overall aim of work package 1 is to contribute to high-quality personalized 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.

1. Setting up and performing an international cohort study of patients in the last phase of life

2. Performing the cohort study according to a carefully developed and pre-tested study protocol in 10 participating countries

3. Providing an overview of the characteristics of the cohort populations in 10 participating countries

4. Providing a quantitative overview of experiences and concerns, expectations and preferences around dying and end-of-life care in 10 participating countries

5. Providing a qualitative in-depth understanding of experiences and concerns, expectations and preferences around dying and end-of-life care in 10 participating countries.

Participants: Erasmus University Medical Center (Netherlands), University of Liverpool (United Kingdom), University of Cologne (Germany), Lund University (Sweden), University Clinic Golnik (Slovenia), University of Bern (Switzerland), Cudeca Hospice Foundation (Spain), University of Bergen (Norway), Landspitali University Hospital, Reykjavik (Iceland), Institute Pallium Latinoamerica (Argentina), University of Humanistic Studies (Netherlands), Arohanui Hospice (New Zealand), Saint Vincent Hospital (Australia), Medical University Wien (Austria), Arohanui Hospice (New Zealand), Saint Vincent Hospital (Australia).

Cohort study

WORK PACKAGE 4

Lead: Medical University of Vienna

The overall aim of work package 4 is to generate insight in the cost-effectiveness of the digital clinical tool to optimize medication management and the volunteer training programme

Specific objectives are:

1. Providing an overview of methods used to assess the cost-effectiveness of palliative and end-of-life care interventions, including existing value frameworks

2. Identifying the strengths, gaps and potential concerns of economic analyses

3. An economic evaluation of the benefits and cost impacts of the digital clinical tool to optimize medication management in the last phase of life

4. An economic evaluation of the benefits and cost impacts and impact modelling of the volunteer training programme.

Participants: Erasmus University Medical Center (Netherlands), University of Liverpool (United Kingdom), University of Cologne (Germany), Lund University (Sweden), University Clinic Golnik (Slovenia), University of Bern (Switzerland), Cudeca Hospice Foundation (Spain), University of Bergen (Norway), Landspitali University Hospital, Reykjavik (Iceland), Institute Pallium Latinoamerica (Argentina), Medical University Wien (Austria).

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cost-effectiveness

WORK PACKAGE 7

Lead: University of Bern (Switzerland)

The overall aim of work package 7 is to establish a Core Outcome Set (COS) for care of dying patients and develop methods for international benchmarking of quality of care.

1. Identifying the most important outcomes of care for dying patients from the perspective of patients, family members and health care professionals

2. Identifying how these outcomes fit in with existing end-of-life care quality registries and quality indicators and outcome measures used in research studies on end-of-life care

3. Developing the COS

4. Developing a framework for an international registry for end-of-life care using COS.

Participants: Erasmus University Medical Center (Netherlands), University of Liverpool (United Kingdom), University of Cologne (Germany), Lund University (Sweden), University Clinic Golnik (Slovenia), University of Bern (Switzerland), Cudeca Hospice Foundation (Spain), University of Bergen (Norway), Landspitali University Hospital, Reykjavik (Iceland), Institute Pallium Latinoamerica (Argentina), Arohanui Hospice (New Zealand), Saint Vincent Hospital (Australia).

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core outcome set

WORK PACKAGE 2

Lead: Erasmus Medical Center (Netherlands)

The overall aim of work package 2 is to develop and evaluate a digital clinical tool to optimize medication management for patients who are in the last months of life, i.e. in the prescription of medication to relieve symptoms and suffering, and in the de-prescription of medication that has no benefits and may involve side effects.

1. Developing a tool that is applicable in three different countries

2. Training physicians in using the tool and in discussing the use of medication with patients

3. Evaluating the effects of this tool on patients’ well-being and symptom load, and on the use of appropriate and inappropriate medications in the patients’ last phase of life

4. Evaluating physicians’ experiences with using the tool.

Participants: Erasmus University Medical Center (Netherlands), Lund University (Sweden), University of Bern (Switzerland).

medication study

WORK PACKAGE 5

Lead: University Clinic Golnik

The overall aim of work package 5 is a. to ensure that the studies within the LIVE project are carried out according to the principles of general ethical standards; b. to contribute to high-quality personalized care at the end of life by understanding the cultural, gender, age and socio-economic variance in patients’ concerns, expectations and preferences.

1. Ensuring adequate and respectful procedures to obtain study participants’ informed consent

2. Facilitating ethical clearance procedures

3. Monitoring ethical issues during the study

4. Exploring the cultural and normative frameworks in end-of-life care in the participating countries

5. Providing insight in the variance in experiences and concerns, expectations and preferences around dying and end-of-life care by gender, age, culture, religion and socio-economic status.

Participants: Erasmus University Medical Center (Netherlands), University of Liverpool (United Kingdom), University of Cologne (Germany), Lund University (Sweden), University Clinic Golnik (Slovenia), University of Bern (Switzerland), Cudeca Hospice Foundation (Spain), University of Bergen (Norway), Landspitali University Hospital, Reykjavik (Iceland), Institute Pallium Latinoamerica (Argentina).

ethics and culture

WORK PACKAGE 8

Lead: Cudeca Hospice Foundation (Spain)

The overall aim of work package 8 is to enhance the engagement of the community at large with the reality of death and dying and effectively disseminate the project’s outcomes.

1. Actively promoting societal debate on and engagement with death and dying

2. Coordinating effective dissemination of the emerging outcomes of the project to all stakeholders groups

3. Constructively engaging stakeholders in sharing and analysing their national end-of-life care strategies and in searching for innovative steps to advance policies and have an impact on efficient, high-quality, patient-centred, sustainable end-of-life care

4. Defining an exploitation plan for specific deliverables of the project (medication tool, volunteer training programme, COS).

Participants: Erasmus University Medical Center (Netherlands), University of Liverpool (United Kingdom), University of Cologne (Germany), Lund University (Sweden), University Clinic Golnik (Slovenia), University of Bern (Switzerland), Cudeca Hospice Foundation (Spain), University of Bergen (Norway), Landspitali University Hospital, Reykjavik (Iceland), Institute Pallium Latinoamerica (Argentina), Arohanui Hospice (New Zealand), Saint Vincent Hospital (Australia).

dissemination and public engagement

Lead: University of Liverpool (United Kingdom)

The overall objective of work package 3 is to develop and evaluate an international volunteer training programme to support patients dying in the hospital and their families.

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1. Adapting and implementing the volunteer programme in five different countries

2. Examining the effects of the volunteer programme on the experience of dying and quality of care as perceived by patients and family members

3. Exploring the effect of the volunteer programme on care of dying patients and their family members as perceived by health care professionals and volunteers

4. Identifying factors that influence the implementation and impact of a hospital volunteer service for dying patients.

Participants: Erasmus University Medical Center (Netherlands), University of Liverpool (United Kingdom), University Clinic Golnik (Slovenia), Cudeca Hospice Foundation (Spain), University of Bergen (Norway), University of Humanistic Studies (Netherlands).

WORK PACKAGE 3

volunteer study

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WORK PACKAGE 6

Lead: Lund University (Sweden)

The overall aim of work package 6 is to ensure a valid, reliable and feasible data collection process that addresses the objectives of work packages 1 through 5 and informs the development of a Core Outcome Set for care of dying patients in work package 7.

Specific objectives are:

1. Selecting and developing instruments to collect data for the cohort and its embedded studies

2. Developing a safe and secure data-entry and storage system.

Participants: Erasmus University Medical Center (Netherlands), University of Liverpool (United Kingdom), University of Cologne (Germany), Lund University (Sweden), University Clinic Golnik (Slovenia), University of Bern (Switzerland), Cudeca Hospice Foundation (Spain), University of Bergen (Norway), Landspitali University Hospital, Reykjavik (Iceland), Institute Pallium Latinoamerica (Argentina), Medical University Wien (Austria).

data collection

WORK PACKAGE 9

Lead: Erasmus Medical Center (Netherlands)

Objectives:

1. To ensure that the project is executed according to the scientific plan and agreed budget

2. To ensure effective communication between the participants and timely reporting to the EU

3. To ensure that any legal, contractual, ethical, gender, equality, intellectual property, financial, administrative or other issues pertaining to the project are dealt with appropriately

4. To establish a sustainable legacy for continued research collaboration at the end of the Project.

Participants: Erasmus University Medical Center (Netherlands), University of Liverpool (United Kingdom), University of Cologne (Germany), Lund University (Sweden), University Clinic Golnik (Slovenia), University of Bern (Switzerland), Cudeca Hospice Foundation (Spain), University of Bergen (Norway), Landspitali University Hospital, Reykjavik (Iceland), Institute Pallium Latinoamerica (Argentina), University of Humanistic Studies (Netherlands), Arohanui Hospice (New Zealand), Saint Vincent Hospital (Australia), Medical University Wien (Austria), Arohanui Hospice (New Zealand), Saint Vincent Hospital (Australia).

project management