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

Abstract

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assisted suicide ("assistance of suicide with intent of repeated conduct", §217 German Criminal Code) has recently been repealed by the national Federal Constitutional Court.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.

“Withstanding ambivalence is of particular importance”—Controversies among experts on dealing with desire to die in palliative care

“…Desire to die may also lead to the construction of a specific exit-plan in case of further physical or psychological deterioration [9]. This understanding is in line with the German Palliative Care guideline for patients with incurable cancer which conceptualizes desire to die along a line of increasing pressure to act [5,10]. The will to live is described as a similarly complex phenomenon which can persist throughout the entire dying process even if it is permeated by experiences such as hopelessness, the feeling of being a burden to others and loss of dignity [7].…”

“…This requires a taboo-free approach, which does not, however, equal agreeing with the patients' wishes to end their lives. Rather, talking about it and thereby widening one's view to possible alternatives can also be considered as suicide prevention [5]. In the context of the latest German case law, it was stressed that we may regret patient decisions in favor of (assisted) suicide and may try everything to change their mindbut in the final consequence, we must accept their free decision.…”

“…Desires to die understood as a phenomenon with various forms, intensities and functions occur frequently in palliative care [5]. Studies report the occasional experience of desire to die in up to 45% of patients with advanced cancer; up to 12% show a strong and persistent desire to die [6,7].…”

“…Therewith, the wish to hasten death is distinguished from the acceptance of impending death or the wish to die naturally. Using the term desire to die, we go beyond this narrow definition and understand the phenomenon as a broader concept [5]. Besides a wish to hasten death even without requiring any accelerating action, a request for assisted dying and suicidal ideation, desire to die may-from this point of view-be expressed as the acceptance of death or satiety with life.…”

Suizidprävention und Palliativmedizin

“…Der Diskurs über das Phänomen des Wunsches nach schnellem, selbst herbeigeführtem Sterben entwickelte sich im Palliativbereich über Jahre unter der Bezeichnung des "Todeswunsches" und des "hastened death", weil mit dem Begriff der Suizidalität rasch eine psychiatrische Diagnose und besonders auch psychiatrische (Zwangs-) Behandlungen verstanden wurden und nicht das Angebot eines verstehenden Gegenübers. Erst mit der S3-Leitlinie "Palliativmedizin für Patienten mit einer nicht heilbaren Krebserkrankung" [14,15] konnte sowohl theoretisch wie praktisch-leitliniengerecht ein übergeordnetes Verständnis von Todeswünschen und Suizidalität aus suizidpräventiver und palliativmedizinischer Perspektive entwickelt werden. Parallel dazu wurden professionelle Handlungskonzepte zum Umgang mit Todeswünschen im palliativen Setting entwickelt und empirisch validiert [16].…”