Caring for terminally ill patients and their families

Quiet room at the Department of Palliative Medicine. (Image: Georg Pöhlein)
Quiet room at the Department of Palliative Medicine. (Image: Georg Pöhlein)

Erlangen-based researchers develop first German-language questionnaire on quality of dying

Supporting terminally ill patients at the end of their lives, relieving their pain, and ensuring the best possible quality of life is maintained is the goal of palliative medicine. ‘I am glad that the significance of palliative medicine is gaining increasing recognition, enabling more and more patients in Germany to benefit from it,’ says Prof. Dr. Christoph Ostgathe, head of the Department of Palliative Medicine at Universitätsklinikum Erlangen.

In light of this, it is important that quality standards for the healthcare structures that have developed in Germany over the years are defined. Collecting data on this subject is an immense challenge, particularly as it needs to be done during an especially difficult time for those affected and their families. Together with colleagues in Mainz, researchers at the Department of Palliative Medicine at Universitätsklinikum Erlangen have now carried out a study in which they tested and adapted a new version of the English-language Quality of Dying and Death (QoDD) questionnaire for German speakers.

This German version is now ready to be used in palliative care wards across Germany, as well as in Switzerland and Austria. The working group now plans to develop the questionnaire further and test its use in other locations, such as care homes and hospices.

We arranged interviews to be carried out in person with those who wanted to support us.

The Quality of Dying and Death questionnaire, developed in the USA, was designed to collect data on experiences of the dying phase and the circumstances of the death from the perspective of close relatives or friends. In order to test this instrument in German-speaking locations, the researchers in Erlangen and Mainz translated the text and carried out an academic study in which they used this translated version to collect data. ‘Between July 2012 and November 2013, we called relatives and friends of patients who had been cared for and died at the palliative care wards in Erlangen and Mainz, around four weeks after the death,’ explains PD Dr. Stephanie Stiel from Universitätsklinikum Erlangen who led the project. ‘We then arranged interviews to be carried out in person with those who wanted to support us.’

In addition to patients’ friends and relatives, two members from different groups of hospital staff also provided their assessments for each patient. The questions covered topics relating to physical and psychological factors, spirituality, the nature of the care, preparation for death, the circumstances of the death, the patient’s social relationships, desired treatment, and ‘whole person concerns’.

A shared goal: the best possible end-of-life care

‘The aim of the study was to find out whether the available questionnaire, which was developed in the context of the US healthcare system, could also be used to evaluate the quality of palliative care in Germany,’ Dr. Stiel explains. In order to do so, the researchers in Erlangen and Mainz carried out around 230 interviews and adapted the questionnaire on the basis of their findings. ‘The questionnaire should now find broad application and enable care situations to be compared and improved,’ says Prof. Ostgathe. ‘The overriding goal is to ensure terminally ill and dying patients and those close to them are given the best possible treatment and support.’ Due to the dynamic development and expansion of care structures in palliative medicine and treatment options in Germany in recent years, demand has been growing for quality of care to be defined and – if necessary – improved. While general and specific quality indicators for palliative medicine are still being discussed, there are now initial international measuring instruments available that are helping to ensure the diverse interdependent requirements of palliative care are met.

Study results

The results of the study have recently been published and are available online in the Journal of Pain and Symptom Management and BioMed Central.

Further information:

PD Dr. Stephanie Stiel
Phone: +49 9131 8542511

Addition information