End-of-Life Decision-Making in Intensive Care Ten Years after a Law on Advance Directives in Germany

Abstract

Background and Objectives: Mortality on Intensive Care Units (ICUs) is high and death frequently occurs after decisions to limit life-sustaining therapies. An advance directive is a tool meant to preserve patient autonomy by guiding anticipated future treatment decisions once decision-making capacity is lost. Since September 2009, advance directives are legally binding for the caregiver team and the patients’ surrogate decision-maker in Germany. The change in frequencies of end-of-life decisions (EOLDs) and completed advance directives among deceased ICU patients ten years after the enactment of a law on advance directives in Germany is unknown. Materials and Methods: Retrospective analysis on all deceased patients of surgical ICUs of a German university medical center from 08/2008 to 09/2009 and from 01/2019 to 09/2019. Frequency of EOLDs and advance directives and the process of EOLDs were compared between patients admitted before and after the change in legislation. (No. of ethical approval EA2/308/20) Results: Significantly more EOLDs occurred in the 2019 cohort compared to the 2009 cohort (85.8% vs. 70.7% of deceased patients, p = 0.006). The number of patients possessing an advance directive to express a living or therapeutic will was higher in the 2019 cohort compared to the 2009 cohort (26.4% vs. 8.9%; difference: 17.5%, p < 0.001). Participation of the patients’ family in the EOLD process (74.7% vs. 60.9%; difference: 13.8%, p = 0.048) and the frequency of documentation of EOLD-relevant information (50.0% vs. 18.7%; difference: 31.3%, p < 0.001) increased from 2009 to 2019. Discussion: During a ten-year period from 2009 to 2019, the frequency of EOLDs and the completion rate of advance directives have increased considerably. In addition, EOLD-associated communication and documentation have further improved.

Standardized High-Quality Processes for End-of-Life-Decision Making in the Intensive Care Unit Remain Robust during an Unprecedented New Pandemic—A Single-Center Experience

“…Data from web-based advance directive platforms indicated that during the COVID-19 pandemic, a significant increase in the demand for advance directive documentation was noted [ 19 ]. The completion rates of advance directives and legal documents among ICU patients reported in this study are similar to completion rates reported to corresponding patient collectives prior to the COVID-19 pandemic [ 6 ]. However, documentation of EOLD-relevant information about patient-sided advance care planning increased, especially in ICU patients admitted with COVID-19, compared to previous years and in comparison to data reported from other European centers [ 6 , 16 ].…”

“…Although increasing over the recent decade, completion rates of advance directives remain low in Germany [ 6 ]. Seniors seem to complete an advance directive more frequently compared to people in the working age [ 8 ].…”

“…A similar explanation might account for the higher participation frequency of board-certified anesthesia and intensive care medicine fellows in EOLDs of patients with COVID-19. The documentation efforts showed also significantly higher rates compared to the already increased documentation efforts of EOLD-associated documentation from pre-pandemic years [ 6 ]. This finding was underlined by data showing that during treatment of patients with COVID-19, effective remote communication of the health care team, the patient, and the patient’s family was associated with significantly better ratings of the overall experience of end-of-life care by the patient’s family members [ 30 ].…”

“…With an advance directive or advance care planning, patients can preserve their autonomy in the moments that they are losing decision-making capacity due to a serious illness or injury. Promotion for completion of advance directives by legal reforms and informal support might have led to an increase of advance directive completion rates over the last decade [ 4 , 5 , 6 ]. However, completion rates of advance directives remain low in general [ 7 , 8 ].…”

Was wissen Fachkräfte im Gesundheitswesen über Vorsorgedokumente?

“…Instrumente zur Vorausplanung für Situationen, in denen eine Person ihren Willen rechtlich nicht mehr erklären kann, existieren in Deutschland in Form der Patientenverfügung, Vorsorgevollmacht und Betreuungsverfügung. Der Bekanntheitsgrad dieser Vorsorgedokumente und deren Verbreitung in der Allgemeinbevölkerung nehmen seit Jahren stetig zu [1,2] und gewinnen im medizinisch-pflegerischen Berufsalltag immer mehr an Bedeutung [3,4,5]. Vorsorgedokumente bieten bei der Behandlung einwilligungsunfähiger Patienten eine Hilfe zur Ermittlung des Patientenwillens, ob durch Beschreibung der (nicht) gewünschten Behandlungsmaßnahmen in bestimmten Lebens-und Krankheitssituationen wie bei der Patientenverfügung oder Benennung eines Bevollmächtigten in der Vorsorgevollmacht bzw.…”