Research is the only way to continuously improve the provision of care for patients and their loved ones.
This naturally also applies to patients with advanced and progressive diseases. Therefore, research has to be an integral part of palliative care. Next to clinical care and education, it is a pillar of our identity as an academic institution at the Department of Palliative Medicine.
In the special situation of palliative care patients, research must of course be carried out very carefully and ethically justifiably, with the utmost respect for patients and their loved ones.
The challenges in palliative care research are not only to address the vulnerability of the patient group. Especially in research at the end of life it is often not possible to interview the patients themselves or to contact them several times over a longer period of time. For this reason, loved ones or the clinical personnel are then asked for an assessment. Particular consideration is given to the current situation of the loved ones when they are involved in accompanying and caring for the patient or when the assessment takes place after the death of the patient.
As in palliative care itself, research in this field revolves around patients and their loved ones and, therefore, has to be interdisciplinary and multi-professional. In addition to medical doctors, researchers at the department include psychologists, social education workers and health scientists.
Research in palliative care relies on cooperation due to the special situation of the patients and the resulting methodological challenges. The Department of Palliative Medicine has taken on this task and successfully established several internal and external, partly inter-faculty, collaborations and research networks.
The research priorities that have developed in recent years can be grouped into three thematic Areas:
- education research
Little is known about the effects that MRSA colonization and/or infection and the respective isolation measures have on end-of-life patients’ quality of life and the health-related outcomes for the family members as well as on job satisfaction and work load of staff. The interdisciplinary multi-center study “MRSA in end-of-life care (MendoL)” used a mixed methods approach. The working group succeeded in developing patient-, family-, and team-centered recommendations for hospitalized patients at their end of life. This approach has been developed taking into account the heterogeneous views of the four groups involved, patients, family caregivers, staff members and institutional stakeholders. Effects for the individual were taken into account. The recommendation offers an empirical based approach on MDRO management and is available in German for download. The recommendations are available in English in the publication: Heckel, M., et al. (2018). "Multidrug-resistant bacterial microorganisms (MDRO) in end-of-life care: development of recommendations for hospitalized patients using a mixed-methods approach." Support Care Cancer 26(9): 3021-3027.
BMBF (Förderkennzeichen 01GY1314) (Projektlaufzeit: 1.1.2014-30.09.2016)
C. Ostgathe, S. Stiel, M. Heckel, (Lehrstuhl für Palliativmedizin, Comprehensive Cancer Center CCC Erlangen-EMN, Universitätsklinikum Erlangen, Friedrich-Alexander-Universität Erlangen-Nürnberg)
F. Lang, J. Tiedtke (Lehrstuhl für Psychogerontologie, Friedrich-Alexander-Universität Erlangen-Nürnberg)
C. Bogdan, (Lehrstuhl für Medizinische Mikrobiologie und Infektionsimmunologier klinische Mikrobiologie, Immunologie und Hygiene, Universitätsklinikum Erlangen, Friedrich-Alexander-Universität Erlangen-Nürnberg)
C. Sieber, A. Sturm (Lehrstuhl für Biomedizin des Alterns, Friedrich-Alexander-Universität Erlangen-Nürnberg)
O. Schöffski, T. Adelhardt (Lehrstuhl für Gesundheitsmanagement, Friedrich-Alexander-Universität Erlangen-Nürnberg