Palliative care is much more than pain relief at the end of life. It includes physical, psychosocial and spiritual care. Crucially, it should improve a person’s quality of life, taking into account their individual wishes and preferences, but also their families and environments. The Palliative Care for Older People in care and nursing homes in Europe (PACE) project presented some preliminary and ongoing research on the topic at this event in Brussels.

How do we support you?

Researchers, practitioners and advocates discussed the current situation regarding palliative care, which is in most cases far from what it could and should be. On average, people with terminal diseases only receive a couple of weeks of palliative care at the very end. Especially people in long-term care and with diseases other than cancer, who receive very little and therefore miss out on support services that could strongly improve their wellbeing. The majority of people who die in hospitals or residential care facilities, die in pain and oftentimes do not get the opportunity to voice their preferences for their end-of-life care, Lara Pivodic from the Free University of Brussels, a PACE partner, explained at the event.

How do we support your family?

Bereavement care should be available to families of people with terminal illnesses. This requires professionals not to shy away from talking about death. Losing a close family member is one of the most difficult things to deal with for anyone, but having support, time and space to be with them during the last days, weeks or months, can make all the difference. In the right setting with the right support, many people actually experience this last journey as very precious because it allows them to reflect, to focus on the here and now and on what and who really matters to them.

What is important to you?

Care services at the end of a person’s life are usually focused on health – but that is not necessarily what is most important to the person themselves. Jiří Horecký from the European Association for Directors and Providers of Long-term Care Services for the Elderly (EDE), explained that the main barriers to good, person-centred palliative care are as follows. First, a lack of well-trained staff. Second, physicians in care teams deciding to send someone to hospital even though they expressed the wish to die at home or in a community care setting. Third, the need for a change in the mindset of care staff to put service users’ preferences first. Fourth, lack of legislative frameworks and policies as well as their implementation at the organisational level.

How is your soul?

Priorities shift in life, but perhaps never more so than at the end of our lives. Our care services should respect the dignity, autonomy and wishes of people with terminal illnesses. The event made clear that social services, and the people working for them need to be properly trained, equipped and supported to do so.