Family caregivers in critical end-of-life situations

Many people would prefer to spend their last days at home. Family members, friends, and acquaintances are often committed to fulfilling this wish. Nevertheless, many people die in hospitals or homes, due to emergency hospital admissions shortly before they pass away. The deciding factors are mental and physical strain on the part of all involved, lack of knowledge about suffering and dying and on how to deal with typical symptoms, but also insufficient support from or even inappropriate reactions on the part of professionals in critical situations. Seeing their family members spending their last days in the intensive care unit is often stressful for family members. They feel guilty because they were not able to fulfil the dying person’s wish to die at home.

This study will examine critical situations at the end of life of persons who are being cared for at home. Family caregivers will be asked what kind of services and which conditions would be needed to avoid un-necessary hospital admissions. To investigate the effects of various conditions and cultural differences, the study will be conducted in the French- and German-speaking parts of two cantons, Valais and Fri-bourg. The research team will learn from the experience of specialists in various organisations. In addition, extensive interviews will be conducted with family caregivers and other people close to those at the end of life.

The results will lead to the development of instruments and workshops that reinforce and support family caregivers and specialists in caring for dying persons. On the one hand, this will contribute to fulfilling the widespread wish to spend the last days at home. On the other hand, to know how to deal with critical situations will provide considerable relief for family members as well as for the health care system as a whole.

Informal caregivers in critical end of life situations