What People Really Need at the End of Their Lives

Hospices and palliative care facilities aim to provide as personalised support as possible to people in the final stages of their lives. However, not everyone is in the same position to actually receive this support. 

What happens, for example, if patients speak very little German and have to make important decisions about their treatment? Or if same-sex partners are not automatically recognised as next of kin? Researchers from the Chair of Health Care Research at Witten/Herdecke University (UW/H) have developed a guide to help organisations identify and overcome such barriers.

When barriers hinder access

However, the challenge does not begin within the institutions themselves: 

“Just because these people have not been visible in a healthcare setting so far does not mean there is no need. It may well be that certain people are unable to access care in the first place due to existing barriers,” explains Till Neugebauer, a research assistant at the Chair of Health Care Research at UW/H.

For this reason, the researchers believe that organisations should not wait until difficulties arise before taking action, but should review their services and processes at an early stage to identify potential barriers.

Practical guidance for day-to-day hospice care

The guidance document, developed as part of the ParDiMi research project (Participatory Development of Guidance on Diversity-Sensitive Palliative and Hospice Care Using the Example of a Migration Background) in collaboration with patients, relatives and staff, demonstrates how this can be achieved.

It contains specific suggestions on how organisations can improve their services. For example, by establishing when professional interpreters should be called in, by providing multilingual information, or by ensuring that same-sex partners are automatically included in care. Case studies and practical tips in the guide facilitate implementation. 

It is aimed in particular at hospices and palliative care facilities that recognise there is scope for improvement in this area. It is designed to help them initiate initial changes without having to develop comprehensive new care plans.

Further information:

The project, funded by German Cancer Aid, ran from October 2023 to June 2026. The guide, along with a supplementary leaflet and short introductory videos, is available free of charge at www.uni-wh.de/pardimi.