End-of-life care in Germany between 2016 and 2020 - A repeated cross-sectional analysis of statutory health insurance data.

BACKGROUND: The Hospice and Palliative Care Act of 2015 aimed at developing and regulating the provision of palliative care (PC) services in Germany. As a result of the legal changes, people with incurable diseases should be enabled to experience their final stage of life including death according to their own wishes. However, it remains unknown whether the act has impacted end-of-life care (EoLC) in Germany. OBJECTIVE: The present study examined trends in EoLC indicators for patients who died between 2016 and 2020, in the context of Lower Saxony, Germany. METHODS: Repeated cross-sectional analysis was conducted on data from the statutory health insurance fund AOK Lower Saxony (AOK-LS), referring to the years 2016-2020. EoLC indicators were: (1) the number of patients receiving any form of outpatient PC, (2) the number of patients receiving generalist outpatient PC and (3) specialist outpatient PC in the last year of life, (4) the onset of generalist outpatient PC and (5) the onset of specialist outpatient PC before death, (6) the number of hospitalisations in the 6 months prior to death and (7) the number of days spent in hospital in the 6 months prior to death. Data for each year were analysed descriptively and a comparison between 2016 and 2020 was carried out using t-tests and chi-square tests. RESULTS: Data from 160,927 deceased AOK-LS members were analysed. The number of patients receiving outpatient PC remained almost consistent over time (2016 vs. 2020 p = .077). The number of patients receiving generalist outpatient PC decreased from 28.4% (2016) to 24.5% (2020; p < .001), whereas the number of patients receiving specialist outpatient PC increased from 8.5% (2016) to 11.2% (2020; p < .001). The onset of generalist outpatient PC moved from 106 (2016) to 93 days (2020; p < .001) before death, on average. The onset of specialist outpatient PC showed the reverse pattern (2016: 55 days before death; 2020: 59 days before death; p = .041). CONCLUSION: Despite growing needs for PC at the end of life, the number of patients receiving outpatient PC did not increase between 2016 and 2020. Furthermore, specialist outpatient PC is being increasingly prescribed over generalist outpatient PC. Although the early initiation of outpatient PC has been proven valuable for the majority of people at the end of life, generalist outpatient PC was not initiated earlier in the disease trajectory over the study period, as was found to be true for specialist outpatient PC. Future studies should seek to determine how existing PC needs can be optimally met within the outpatient sector and identify factors that can support the earlier initiation of especially generalist outpatient PC. TRIAL REGISTRATION: The study "Optimal Care at the End of Life" was registered in the German Clinical Trials Register (DRKS00015108; 22 January 2019).

Implementation of quality indicators for palliative care for patients with incurable cancer at palliative care units in Germany (Quincie): a study protocol for a mixed-methods study.

INTRODUCTION: Guidelines are important tools for supporting quality management in the care of patients with cancer. However, in clinical practice barriers exist to their implementation. Consequently, Quincie aims at: (1) gaining a comprehensive picture of the implementation of quality indicators from the national guideline on palliative care for patients with incurable cancer in palliative care units and (2) describing the factors that facilitate and hinder their implementation to develop recommendations. METHODS AND ANALYSIS: The Quincie study follows a mixed-methods approach across two study phases. In phase 1, routinely collected data of 845 patients with incurable cancer from eight palliative care units in the commuting area of the Comprehensive Cancer Centre Lower Saxony will be analysed, regarding the implementation of 10 quality indicators from the national guideline on palliative care. Structural characteristics of the palliative care units will also be collected. In phase 2, recommendations for the practical implementation of the quality indicators, focusing on the achievement of the quality objectives identified in phase 1, will be developed in an implementation workshop. These recommendations will be subsequently agreed on via a Delphi survey. ETHICS AND DISSEMINATION: Ethical approval has been given by the ethics committee of the Hannover Medical School (first vote, No. 10567_BO_K_2022) and other relevant institutions. The results will provide urgently needed insights on the implementation of the national guideline on palliative care in clinical care and on the factors that facilitate and hinder this implementation. The results are expected to promote better care for patients with incurable cancer. The results will be directly reported to the participating palliative care units and will be published in relevant peer-reviewed journals. They will also be presented at national conferences. TRIAL REGISTRATION NUMBER: German Clinical Trials Register (DRKS00029965).

[Optimal care at the end of life from the relatives' perspective: An interview study in two counties of Lower Saxony]. / Optimale Versorgung am Lebensende aus der Angehörigenperspektive ­ eine qualitative Interviewstudie in zwei niedersächsischen Landkreisen.

BACKGROUND: Established as health insurance benefit in 2007, Specialized Palliative Home Care (SPHC) has been continuously expanded. At the same time, health policy initiatives intended to promote general outpatient palliative care. In comparison to urban centers, the development of palliative care networks in rural areas appears to be more difficult. In addition, there is an increasing shortage of family doctors in primary care. Family members play a key role in the home care for seriously ill patients. This paper therefore investigated the experiences of relatives with the end-of-life (EoL) care for family members with life-limiting chronic diseases in more rural regions. The aim was to determine aspects that, from the relatives' point of view, are essential for optimizing EoL care. METHODS: Qualitative after-death interviews with relatives in two districts were conducted in the first six months of 2019, who were recruited by the deceased patients' family doctor. Relatives (age ≥18 years) of patients who died in 2018 were included. The interviews were digitally recorded, transcribed and analyzed using content analysis. RESULTS: In the first half of 2019, 28 after-death interviews were conducted with 30 relatives (77% female, age: 32 to 83 years) from rural (n=8) and urban communities (n=22) in two Lower Saxonian counties. They were mostly in a partnership or parent-child relationship with the deceased person. The central categories and needs that emerged in the analysis were: (1) communication about dying and death, (2) information and enabling, (3) support of and relief for relatives, and (4) continuity and cooperation of the services involved in EoL care. The results underline the fact that family caregivers in particular find open communication, information to provide them with the confidence to act, recognizing and responding to support needs and continuity in the course helpful in coping with EoL care situations. Access problems to specialist medical care, deficiencies in care coordination and bureaucratic hurdles in the provision of medical aids proved to be an additional burden. DISCUSSION: The results underline the importance of open communication and the integration of relatives into the care process for optimal care at the end of life. Close cooperation between the services involved and proactive support for relatives are essential, too, especially in rural areas where the challenges of accessing and coordinating care services are a major concern. CONCLUSION: The identification and communication of complex problems, the needs of patients and their relatives and possible barriers to accessing care services are prerequisites for the timely initiation of palliative care measures and support for family caregivers. In addition to needs-based care structures, the optimization of EoL care in home settings requires cooperation and networking between professional stakeholders.