13 organisations from seven European countries have received 7.55 million euros of funding from the European Commission’s Horizon Europe programme to launch a large-scale project, EU PAL-COPD, to advance the integration of palliative care in the treatment routine of people with advanced Chronic obstructive pulmonary disease (COPD) in different healthcare systems in Europe. Coordinated by the Vrije Universiteit Brussel, the project started on 1st January 2024 with the long-term vision to improve well-being of life for millions of COPD patients and their families. The European Respiratory Society (ERS) is part of the project’s consortium.
Imagine Tina and John, a retired couple. For the last 20 years, Tina has been living with COPD. Yet, in the last five years, her condition has worsened, and multiple hospital stays just seem to keep piling up. On her last admission, they were warned that Tina may die, yet no plan was given as to how to handle the situation. John is fighting to keep things going, ensuring Tina has what she needs to get through her days as best she can. At the same time, he is emotionally distraught and scared of the unknown.
Looking beyond the disease: patient-centred and family-centred care
Chronic lung diseases are a devastating reality for many people all around the world. One particularly concerning disease in this category is COPD, which is responsible for 2.9 million deaths annually and is the third leading cause of death worldwide. While palliative care, a specialised multidisciplinary and multiprofessional approach for those with life-threatening conditions, has traditionally been associated with cancer care in Europe, there is a growing recognition of its benefits for individuals with non-malignant diseases like COPD. This type of care seeks to improve physical, mental, social and existential well-being for patients and their families. Despite the benefits, the timely implementation of palliative care in non-cancer settings within the European Union has been limited. Limited access to palliative care services, the lack of information and involvement in decision-making for patients and inadequate training of healthcare providers compound the problem, making current COPD palliative and end-of-life care not optimal.
EU PAL-COPD is dedicated to enhancing end-of-life care for those living with advanced COPD.
Through the implementation of a highly innovative non-pharmacological service model called ICLEAR-EU in different healthcare systems in Europe, the goal is to improve not only medical care and physical well-being, but also prioritise a patient-centred and family-centred approach with advance care planning and shared decision-making. In order to successfully implement this palliative care service model into respiratory medicine, the project’s consortium will conduct a clinical trial in 18 hospitals across six European countries (Belgium, UK, Netherlands, Denmark, Hungary, Portugal). This is the first large-scale international trial systematically integrating palliative care into respiratory care. The focus of its design is to synergise respiratory teams with interdisciplinary palliative and primary care teams. What truly sets this project apart is the dedication to incorporating the patient’s perspective by including their input as of the start of the project.
Joining forces towards better life quality for COPD patients
The EU PAL-COPD project, co-led by Prof. Koen Pardon and Prof. Luc Deliens from the Vrije Universiteit Brussel, unites a pan-European consortium of experts from several areas, including medical sciences, respiratory care, community nursing, primary care, palliative care, sociology, psychology, health services, economics, and communication, supported by renowned institutions such as European Respiratory Society, European Association for Palliative Care, Lungs Europe, amongst others.
With EU PAL-COPD, people like John and Tina will be better emotionally supported and informed in a way that allows them to openly communicate about the illness and end-of-life needs. This project is a beacon of hope for them and many others affected by advanced COPD, promising a better well-being for advanced COPD patients and their families.