For the first time in Germany, a national guideline will provide evidence and consensus-based recommendations for best practice in palliative care. Project team leaders, Claudia Bausewein, Steffen Simon and Raymond Voltz explain.
Following a four-year-project under the leadership of the German Association for Palliative Medicine (Deutsche Gesellschaft für Palliativmedizin), the National Guideline on Palliative Care for Patients with Incurable Cancer was published in May 2015 funded by the German Guideline Program in Oncology (a consortium of the German Cancer Aid, the German Cancer Society and the Association of the Scientific Medical Societies in Germany).
More than 50 multi-professional and interdisciplinary institutions and 120 experts were actively involved in the development and consensus process of the guideline. Moreover, people from diverse professional societies, as well as representatives of patients and their families played an important role. In close collaboration, these diverse contributors formulated and formally consented to treatment recommendations on the basis of both best available evidence (scientific studies) and clinical experience to ensure the provision of timely and best possible palliative care. From a total of 230 recommendations, half are evidence-based, the other half was based on consensus.
The main goal of the guideline is the overall improvement of care of patients suffering from incurable cancer and their families. In order to achieve this, multiple aspects have to be taken into consideration, which are addressed in the various chapters of the guideline. These are breathlessness, cancer pain, constipation, depression, communication, the dying phase and organisation of palliative care in the healthcare system. The recommendations have been developed with the aim of supporting all healthcare providers involved in the treatment of these patients and will serve as a key aid for future decision-making in practice.
For the first time, there is now a national guideline in Germany complying with the highest quality standards in guideline development according to strict methodological criteria: evidence appraisal through assessment of primary studies and systematic literature reviews, representative guideline group, and structured process of reaching a consensus. All this allows the guideline to provide evidence and consensus-based recommendations for best practice in palliative care.
The development of the new guideline clearly demonstrates the significant evidence available in palliative care to date. It enhances the decades of experience already collected in palliative care practice. However, it also shows that there is an ongoing need for research in this field to fill the evidence gaps and for further efforts and investments to continue the improvement of palliative care. To contribute to this important ongoing development, an extension of this national guideline is currently in progress on eight additional topics (malignant bowel obstruction, nausea and vomiting, sleep disturbance/night agitation, wound care, fatigue, anxiety, treatment goal decision-making, and dealing with the desire for hastened death). This will be published in 2018.
Links and references
- Bausewein C, Simon ST, Pralong A, Radbruch L, Nauck F, Voltz R: Clinical practice guideline: Palliative care of adult patients with cancer. Dtsch Arztebl Int 2015; 112: 863–70. DOI: 10.3238/arztebl.2015.0863.
More about the authors
Prof. Claudia Bausewein is Director of the Department of Palliative Medicine at Munich University Hospital, Germany.
Dr. Steffen Simon is Consultant in Palliative Medicine and Internal Medicine, Senior Clinical Research Fellow at the Center of Palliative Medicine and Clinical Trials Unit, University Hospital Cologne, Germany.
Prof. Raymond Voltz is Director of the Center of Palliative Medicine at the University Hospital Cologne, Germany.
EAPC to create an online database of palliative care guidelines – can you help?
The European Association for Palliative Care (EAPC) head office team are creating an online database of national palliative care guidelines. If your national palliative care association has produced guidelines and would be willing to share these with others, please email Catherine Murray with information and contact details so that she can take this further.