More about the EPIC sub-studies
Survey on Palliative Care and Law Perceptions
Many ICU clinicians are uncertain whether it is legally permissible to limit treatment; laws differ in European countries and do not always support decision-making. Often, ICU clinicians are not aware of palliative elements in their practice.
Therefore, a European survey on Palliative Care and Law Perceptions is being conducted including a minimum of 500 physicians and nurses from at least 20 European countries.
Mapping facilitators and barriers for palliative and end-of-life care in ICU
In order to improve palliative and end-of-life care in ICU through implementation of the interventions tested in the EPIC study, knowledge about facilitators and barriers is needed. A number of studies have previously identified facilitators or barriers within four main areas: Palliative and end-of-life decision-making, Patient and family involvement, ICU environment, and Organisational structures. However, the studies are almost solely based on healthcare professionals’ opinions, and the individual studies are mostly mono-national.
Therefore, the aim of one of the EPIC sub-studies is to map facilitators and barriers for palliative and end-of-life care in the ICU based on a broad group of national and international diverse participants using quantitative and qualitative methods.
Data collection will include:
- Responses from the European survey on Palliative Care and Law Perceptions (sub-study 1). In the survey, three open-ended questions regarding facilitators and barriers have been added.
- Questions about facilitators and barriers for palliative and end-of-life care have been added to the EPIC randomised controlled trial (RCT), including three questions for patients and relatives (open ended) and three questions for healthcare professionals (two questions with drop-down options to choose from and one open-ended).
- Interviews with Danish patients, relatives, ICU physicians, ICU nurses and ICU management.
- Interviews with ICU nurses and physicians from an EPIC RCT participating ICU from each of the five participating countries.
Shared decision-making
Shared Decision-Making (SDM) is a collaborative process through which a clinician supports a patient to reach a decision about their diagnostics, treatment or care. It ensures that individuals are supported to make decisions that are right for them and SDM is a key component of personalised care. Patient decision aids (PtDAs) are either web-based or paper-based tools to improve the process of SDM. They help the health professional to remember the different steps through the conversation, at the same time that they offer the patient a visual aid to compare the different treatment options and thereby increase patient’s participation in the consultation. Furthermore, patients feel more knowledgeable, better informed, and clearer about their values when a PtDA is used either before or during the consultation compared with patients who were not presented with a PtDA.
The aim of this EPIC sub-study is to engage patients and their families in the decision-making process by developing an evidence-based and preference-sensitive patient decision aid in ICU and to explore the perception of the patient decision aid in a different cultural setting.
Data collection will include:
- A literature review on different shared decision-making initiatives in the ICU
- Interview with Danish patients, relatives, and healthcare professionals regarding shared decision-making about palliation in ICU
- Developing and testing a patient decision-aid on palliation in Danish ICUs
- Translating and pilot-testing a German version of the patient decision-aid in German settings to examine usability in a different culture
Ethical analysis
Palliative care, a discipline aimed at improving the quality of life of people with life-threatening illnesses, typically operates within specialized units.
Currently, ICUs focus primarily on lifesaving interventions, resulting in limited incorporation of palliative care practices. To bridge this gap, tools are needed to facilitate the integration of palliative care in ICUs. Telehealth, a proven approach in various contexts, offers promising opportunities for this integration. For instance, telepalliative care within ICUs can involve scenarios such as an ICU physician consulting a palliative care specialist via video conferencing to address complex cases, remote monitoring of patient symptoms by a palliative care physician via a robotic platform, and involving family members in advance care planning discussions through video conferencing.
However, when introducing new digital technologies into palliative care practices, it is crucial to consider the ethical issues involved.
→ more here | press release of the Centre for Biomedical Ethics and Law, KU Leuven
