2016; Volume 17, No 2, February
Policy and Advocacy
A report, commissioned by the German National Academy of Sciences Leopoldina and the Union of German Academies of Sciences and Humanities, specifically addresses the importance of developing a palliative care research agenda in Germany. Professor Lukas Radbruch, who co-chaired the expert multidisciplinary panel, explains some of the key recommendations and how these may help to advance palliative care in the country.
Palliative care has developed continuously in all areas since the first steps in the 1980s. More than 250 inpatient palliative care units, more than 200 inpatient hospices, numerous home care networks and specialist home care services, and more than 1,500 voluntary services provide palliative care for patients and caregivers who need it. The palliative care provided at these locations is governed by a number of different statutory regulations. Only a few countries have statutory regulations and an entitlement to specialist outpatient palliative care (SAPV) equal to that offered in Germany.
Palliative care is part of the undergraduate curriculum for medical students and acknowledged as a subspecialty by the medical boards. The regulations governing narcotics in particular have been adapted in the course of a multi-stage process. There has also been an updating of laws and regulations, for example on advance directives in 2009, culminating in a palliative care and hospice law that was passed in December 2015.
However, compared with other countries, Germany is only in the middle field when it comes to palliative care. A comparison of the quality of death in 40 countries around the world by the Economist Intelligence Unit ranked Germany only in eighth position in 2010, and this has been confirmed in a recent update of this survey in 2015, which ranked Germany in seventh place, behind the UK, Australia, New Zealand, Ireland, Belgium and Taiwan.
Palliative medicine research structures have been permanently established at only nine of the 36 university medical institutions in Germany. They have limited resources at their disposal in terms of both personnel and funding, with the result that only slow progress is being made at these centers toward the advancement of research into palliative medicine. No permanent resources are available at the other 27 medical faculties for research into palliative medicine. Individual research projects into palliative medicine have, however, been initiated by other departments and disciplines, such as general medicine, anesthesiology and psychosomatic studies. Until now, there have been no specific funding programmes in Germany for research in the field of palliative medicine.
From this baseline, the German National Academy of Sciences Leopoldina and the Union of German Academies of Sciences and Humanities commissioned a report on palliative care in Germany, with the specific remit to develop a research agenda for this field. A multidisciplinary expert panel, which I had the honor to chair with Prof. Hans-Peter Zenner, developed the report.
It gives a number of recommendations, including three basic ones for the provision of palliative care:
- a homogeneous, comprehensive level of high-quality care throughout Germany, which – in contrast to the present situation – is accessible to all those in need;
- a commitment by every region in Germany to meet in full the actual costs of science-based palliative care in hospitals, care facilities and the home environment;
- a package of care, scientifically proven and available to all those in need of it in Germany.
This will necessitate the ongoing development of a body of evidence supporting the provision of palliative care in Germany.
This will require a paradigm shift so that palliative care becomes a science-based discipline, and a concomitant guarantee that appropriate support will be provided for research in palliative medicine. Ensuring care provision and healthcare research should extend beyond palliative care for cancer patients. Explicit efforts should also be made to improve palliative care in the long term for patients with other medical conditions: those with multimorbidity, dementia and disabilities, patients from all age groups and social situations, care home residents, prison inmates, or the homeless.
Based on this, the following recommendations are formulated for the development and implementation of palliative care research.
- Recommendation 1: The development of an independent national palliative strategy
- Recommendation 2: Promoting specific methods and key issues in the area of interdisciplinary palliative care research
- Recommendation 3: Promoting the structures for interdisciplinary palliative healthcare research
- Recommendation 4: Involving patients and their families in decision-making on the drawing-up of a research agenda
The report fleshes out a detailed research agenda in 11 fields, from basic biomedical research via medical technology research to research on society and end-of-life care. Full details can be found in the English version of the report.
The Leopoldina Academy has well established and effective advocacy and public awareness strategies, and has launched several activities to disseminate the report in the past year. As a first success, the German Ministry of Research and Education has just released a call for palliative care research with different funding areas providing specific palliative care research funding for the first time in Germany.
We hope that the research agenda can also be used for information, and maybe inspiration for other countries, for decision-makers in the ministries of health and research, and for palliative care researchers who are in the process of strategic planning for future research activities. Patients have a right to the best possible palliative care, and research results will allow us to improve patient care toward that goal.
More about the author
Lukas Radbruch is Chair of the International Association for Hospice and Palliative Care; Chair of Palliative Medicine and Director of the Department of Palliative Medicine, University Hospital Bonn, and Director of the Centre of Palliative Care, Malteser Hospital Seliger Gerhard Bonn/Rhein-Sieg, Bonn, Germany.
Read his bio here.