'Desire to Die' in palliative care patients-legal framework and recommendations of the national evidence-based guideline on palliative care in Germany

Background: Desire to die, understood as a broad phenomenon, is common in patients receiving palliative care. Euthanasia ("termination of life on request", 216 German Criminal Code) is currently forbidden in Germany, the legal restrictions with regard to assisted suicide ("assistance of suicide with intent of repeated conduct", 217 German Criminal Code) has recently been repealed by the national Federal Constitutional Court. This dynamically changing legal situation adds to health professionals reported uncertainty in dealing appropriately with a desire to die. Methods: As part of the new extended version of the German Palliative Care Guideline for Patients with Incurable Cancer, evidence and consensus-based statements and recommendations on desire to die were developed by an interdisciplinary and multi-professional working group. The best available evidence was identified through systematic literature searches and by asking experts for further known quantitative as well as qualitative literature. Included publications were assessed as recommended by the Scottish Intercollegiate Guidelines Network (SIGN). Due to the limited availability of high-quality empirical publications related to desire to die, close attention was paid to national clinical expertise to develop recommendations. Consensus for these recommendations was reached at a conference of the guideline group consisting of elected representatives from 61 professional societies and patient associations. Each recommendation was approved by at least 75% of those present. Results: The expert panel developed and agreed on 21 statements and recommendations on desire to die and related phenomena. A descriptive definition was agreed upon of desire to die as a complex phenomenon with individual causes, manifestations, and consequences. The potential background of desire to die, its meanings, functions and possible interventions are described. The guideline recommends proactively addressing and exploring a potential desire to die as the intervention that should be considered before all others, because evidence from studies on suicidality found no negative effect when asking study participants about suicidality. Conclusions: The guideline informs health professionals working within the German statutory framework, how to care for and communicate with patients who are receiving palliative care and who express a desire to die.