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The iLIVE Project concludes its research on end-of-life care with a call to hear the voice of patients with advanced illness

Updated: Feb 25

The voice of patients with advanced illness can and should be heard. This is one of the main messages that derive from the iLIVE Project, an international research study that is now coming to an end, oriented to the development of interventions to alleviate the symptoms and suffering that occur at the end of life for patients and their families. Thousands of patients, relatives and health care professionals have taken part in the different studies that have shaped this project. The research funded by the EU through the Horizon 2020, has been developed over five years, since 2019. The project has already started to share results within the scientific community, and with policy makers and palliative care leaders all around the world, to improve care strategies and to create new protocols for patients, relatives, and health care professionals.

The study has looked upon the expectations and concerns of thousands of patients and relatives to better understand their needs and adapt the caring strategy to achieve greater well-being, both physically and psychologically. The results will also help rationalise medical treatments by optimising the use of medication. The project has also created a solid scientific basis for integrating volunteers in hospitals and health care centres to support end of life care. The study has quantified the positive impact that these teams have not only on the well-being of patients and their relatives, but also in the hospital environment and among health professionals themselves.

A total of 14 scientific partners from public and private clinical and academic settings have participated. The study was coordinated by Professor Dr Agnes van der Heide, Erasmus University Medical Centre, Rotterdam, and the Chair of the International Collaborative for Best Care for the Dying Person, Professor John Ellershaw of the University of Liverpool. In addition, the following have taken part in the study:

- University of Humanistic Studies, The Netherlands

- Clinical University of Cologne, Germany

- University of Lund, Sweden

- Clinical University of Golnik, Slovenia

- University of Bern, Switzerland

- Cudeca Hospice Foundation, Spain

- Haukeland University Hospital, Bergen, Norway

- Landspitali, University Hospital, Reykjavik, Iceland- Medical University of Vienna, Austria

- Pallium Latin-American Civil Association, Argentina

- Arohanui Hospice Service Trust, New Zealand

- St. Vincent's Hospital, Australia

The iLIVE project has been developed sharing international of knowledge and experiences on end of-life care, based on several key studies:- An observational study to better understand the experience of death and dying in which more than 4,500 people, including patients, family members and healthcare professionals, have taken part. The study analysed participants' concerns, expectations and preferences regarding palliative care and end-of-life treatment and addressed ethical issues in end-of-life care practice and research. One of the main findings is that 70% of dying people wishes more open discussion about death and dying in their society. When in a healthcare context, patients in the last phase of life are asked about concerns and fears, less than 1 in 5 mention concerns about symptoms, whereas the majority mention concerns about loss, family, and identity. There is a variety of emotional suffering involved and family engagement and support are paramount.

-The ethical aspects of palliative care and the perception of this medical area has also been addressed in the study. In most countries, the researchers have encountered dissatisfaction with end-of-life care communication and information. In general, patients and relatives express more satisfaction with hospice and specialized palliative care in comparison with care in hospital acute wards. The study shows that the voice of patients with advanced illness can and should be heard, and the recommendations for policy makers include that end-of-life care should facilitate appropriate, non-medicalised goodbyes.

- An experimental study on the administration of medication to alleviate physical symptoms in the last phase of life, with the development of a digital medical tool that allows professionals to easily assess treatments as a whole, with the aim of optimising medication intake and avoiding over-medication or inadequate treatments for patients. The iLIVE project has highlighted the need for this kind of tool for patients in last phase of life. In fact, all the physicians taking part in the study considered that this tool may be useful for the decision making in medication management. The data also shows that 80% of the patients are satisfied with their use of medication. The study shows that individualized care plans bring more satisfaction to both patients and relatives, and improve symptom control.

- A volunteer compassion-based training programme to address the psycho-social support of dying patients in hospital and their families. This part of the project has developed a specific core curriculum training programme for volunteers and has been able to evaluate the impact of the presence of these teams in the hospitals themselves. This volunteer services provided a unique source of ‘community based’ support focussed on existential and emotional needs, complementing the formal clinical care of the ward. The opportunity to offer this kind of attention was favourably valued within the busy hospital environment.

More work is needed in this area to explore cultural differences across different countries and to better inform policy makers, but the project has found that hospital end of life care volunteers can contribute to person centred and individualised humanised care for dying patients.

Among the key messages for policy makers, the study reveals insufficient end of life Communication and care, so more training along these lines is needed for clinicians. Other problems detected in the study are a fragmented health care system and insufficient coordination among settings and wards. Also, the current guidelines centre in clinical practice, and are not, therefore, patient centred.

- A cost-effectiveness analysis of the digital medical tool to optimise medical management, and the hospital's voluntary training programme. This team alerts for the need of respect for cultural and religious sensitivity in regard of information, communication, and care by listening intensively to the patients and families’ voices. So, policy makers are encouraged to provide best practice recommendations and regular training for all health care professionals covering the most important topics of high-quality care for the dying patient. - A sustainable international framework for referrals, quality improvement and research through the development of a system whose focus is the final care of the dying patient is needed. - A programme of activities, both face-to-face and online, has tried to informed and engaged the public about normalising death and dying in society, and which has gathered citizens' preferences and ideas to integrate them into the project.

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