Benchmarking palliative care practices in neurooncology: a german perspective

This study strictly adhered to the ethical principles outlined in the 1964 Helsinki Declaration and its subsequent amendments. The study was approved by the ethics committee of the Jena University Hospital (reference number: 2022–2753-Bef) and all respondents provided informed consent. Anonymous survey responses were permitted to protect the privacy of the participants. The anonymized data are available upon reasonable request.

We conducted a national survey at both DKG-certified and non-certified academic neurooncology centers with the goal of identifying the structures and concepts of palliative care for patients with neurooncological conditions.

The survey was developed and hosted on an internet platform (Nextcloud Version 24.0.4 Enterprise, Nextcloud GmbH, Stuttgart, Germany). An English translation of the survey is provided (Supplementary file 2).

The survey link was distributed to the head and / or coordinator of all DKG-certified or DKG-not certified neurooncological centers in November 2022. Data were sourced from the directory of DKG-certified centers (https://​www.​oncomap.​de, OnkoZert GmbH, Neu-Ulm, Germany) and the Association of University Hospitals in Germany (https://​www.​uniklinika.​de, Association of University Hospitals in Germany e.V., Berlin, Germany, date of access November 1st 2022). A reminder email was sent after four and eight weeks. In total, the survey was open from 14th November 2022 to 24th February 2023.

The survey included questions about the location and type of the institution, the specialties involved in the neurooncology center, who conducts follow-up care for neurooncology patients, the presence of a palliative care department or coverage by other specialties, the availability of complex oncological treatment for neurooncology patients, the presence of a functioning palliative care network, the use of standardized screening tools for psycho-oncological needs or quality of life, the point at which palliative medicine physicians are involved with neurooncology patients, whether palliative treatment requires the cessation of anti-tumor therapies, the use of standardized palliative care screening for neurooncology patients, the presence of palliative care nursing outside of the palliative care unit, the availability of spiritual care concepts and chaplaincy, and the use of standardized screening for spiritual needs. The completed questionnaires were checked for plausibility by the study team. Any implausible data were resolved after consultation with the respective clinic representatives.

Data were extracted to an Excel file (Microsoft Excel for Mac; Version 16.78, Microsoft Cooperation, Redmond, WA, USA) for analysis. Additional data were obtained directly from the directory of DKG-certified centers (https://​www.​oncomap.​de, OnkoZert GmbH, Neu-Ulm, Germany) and the Association of University Hospitals in Germany (https://​www.​uniklinika.​de, Association of University Hospitals in Germany e.V., Berlin, Germany, date of access: November 1st 2022).

Data were analyzed using descriptive statistics. Descriptive statistics including minimum, maximum, mean, and standard deviation (SD) were calculated for all continuous variables. Frequencies and ratios were calculated for binary variables. For statistical analyses and graphing, R studio version 2023.03.1 + 446 and Graph Pad Prism 9 for macOS (Version 9.5.0, GraphPad Software, Inc., La Jolla, CA, USA) was employed.

We also used Wilcoxon rank-sum test to compare the availability of specific specialized services between institution and certification types, as well as by geography. A p-value of < 0.05 was considered statistically significant. In addition to the survey, we collected data from the DKG website and other online sources such as hospital websites, to provide additional information about the certification process and structure of neurooncological centers.

A total of 46 responses were received from the 57 centers contacted, resulting in an 81% response rate. The most prominently represented federal states were the two most populous ones: North Rhine-Westphalia (n = 11) and Bavaria (n = 9). Notably, there were no responses from neurooncological centers in the federal states of Brandenburg and Hamburg, both characterized by relatively small populations. Figure 1 and Table 1 provide a comprehensive breakdown of responses by federal state.

The survey encompassed feedback from 32 university centers and 14 non-university centers.

All of the participating centers were DKG-certified. 18/46 centers were affiliated with a CCC.

All responders stated that a neurosurgical service formed part of their neurooncological center. In four cases, the neurooncological center was exclusively run by neurosurgeons, without direct input from other affiliated specialties. The remaining 42 neurooncological centers listed neurologists, neuroradiologists, medical oncologists and radiooncologists, neuropathologists and neuroradiologist as part of their core neurooncological team. 38/46 responders (82.6%) stated that palliative care specialists were also an essential part (Fig. 2).

According to the survey results, outpatient follow-up care for neurooncological patients involved neurosurgeons (n = 40), radiation therapists (n = 22), neurologists, and medical oncologists (n = 20 each, multiple answers were possible). In some instances, follow-up care was provided at several institutions.

Dedicated palliative care departments were available at 35/46 institutions (76.1%). In addition, 31/46 responders (67.4%) stated that palliative care nurses were available to provide specialized input for patients on non-palliative wards. Palliative care physicians regularly take part in neurooncological tumor boards at only 16/46 institutions (34.8%) and patients’ palliative care needs were discussed and documented in tumor board meetings at 13/46 centers (28.3%). There was no statistically relevant difference regarding all of these aspects between organ centers and CCCs (p > 0.05, Wilcoxon rank-sum test).

44 out of 46 centers (95.7%) have well-functioning specialized palliative outpatient care networks in their regions.

There was substantial variation in the timing of involvement of palliative care specialists among the 46 neurooncological centers. The most frequently stated trigger was neurological or general deterioration (n = 22, 47.8%). Four respondents indicated that palliative treatment necessitated the cessation of all oncological therapy at their institutions. However, 14 centers (30.4%) asserted that they consistently adopt early integration, with specialized palliative care being initiated at the first diagnosis of an incurable disease in 13 centers (28.3%).

Various standardized screening tools were employed to assess psychological well-being and quality of life across different centers. Palliative care burden was evaluated in 32 centers using a validated screening tool (69.6%), with 22 centers utilizing the MIDOS and 8 centers employing the IPOS. Psycho-oncological distress was measured using the distress thermometer in 37 centers (80.4%), and the Basic Documentation for Psycho-Oncology (PO-Bado) was used in 7 centers. Quality of life was assessed using the EORTC QLQ-C30 and/or EORTC QLQ-BN20 instruments in 11 centers (23.9%). A psycho-oncology service was available at all centers.

Spiritual caregivers were accessible in all but one institution. In the majority of centers, Christian pastors (n = 39, 84.7%) were available, and Muslim chaplains were present in at least 9 out of 46 centers (19.5%). Five out of 46 respondents (10.8%) reported the establishment of spiritual care concepts at their institutions. However, only 2 out of 46 respondents mentioned the existence of a standardized screening protocol for spiritual needs (Fig. 3).

Seventeen out of 46 representatives (36.9%) indicated that they engage in advanced care planning when managing dealing with neurooncological patients. 9/46 responders (19.6%) stated that they provided a palliative care passport for continuing care to patients as standard. Such passports contain essential information about a patient and their wishes, including regarding goals of care, advance care directives, potential treatment limitations, and faith aspects. 44/46 responders (95.6%) declared that there was a well-functioning specialized palliative out-patient care network in their region. Among these, referral to such a network was facilitated by the staff of the neurooncological center in 27 out of 46 institutions (58.7%).

These survey results provide a snapshot of the palliative care provisions across leading German neurooncology centers. It demonstrates a broad spectrum of practices and approaches towards palliative care of neurooncological patients, reflecting both the inherent complexity of neurooncology and the diverse healthcare settings in which care is delivered. Considering the frequently elevated symptom burden experienced by neurooncology patients and the substantial overlap between the realms of neurooncology and palliative care, achieving comprehensive patient care hinges on interdisciplinary collaboration and the early integration of palliative care.

From our perspective, neurooncological treatment aimed at extending lifespan and palliative support complement each other. Palliative medicine extends beyond end-of-life care and its primary objective is to enhance the quality of life through multidimensional treatment of suffering within a multi-professional team. Suffering inherently encompasses physical, psychological, social, and spiritual dimensions to varying degrees [10, 11]. Therefore, the question of involvement and timing of palliative care is critical. Current guidelines strongly advocate for the early integration of (specialized) palliative care [1, 12]. Additionally, the latest ASCO guidelines recommend the inclusion of palliative care for all patients with advanced tumor disease within 8 weeks of diagnosis [13]. Approximately 75% of analyzed neurooncology centers have dedicated palliative care departments, and around 95% have a well-functioning, specialized palliative outpatient care network in their respective regions.

The initiation of palliative care demonstrates variability, with only 30% of centers involving palliative specialists soon after diagnosis. There is a notable deficiency in data regarding palliative care structures in European countries. A single-center study from the United States in 2017 highlighted limited early involvement in palliative care, with 37% of patients receiving early consultations [14]. Similarly, a literature review in the US indicated that 57% of neuro-oncological caregivers referred patients to palliative care due to symptom worsening, and 18% did so only near the end of life [15]. These findings are consistent with our survey results. Research from China and Sub-Saharan Africa also indicates a delayed engagement with palliative care specialists until late in the disease course [16, 17]. These observations suggest a need for systematic assessment and potential adjustment of the timing for palliative care integration to improve patient care.

In German neurooncological centers, the engagement of palliative care specialists within tumor board discussions is notably infrequent. Approximately a third of these centers include palliative care physicians in neurooncological tumor boards, and in less than 30% of centers are patients' palliative care needs discussed and documented during these meetings. The discussion of patients' palliative care needs and wishes, along with the introduction of a palliative care perspective, appears important. Integrating the palliative care perspective could offer crucial insights into patient needs and ensure a comprehensive care approach. Hence, we advocate that the palliative medicine perspective be incorporated into the interdisciplinary tumor board, the principal decision-making entity in Germany. Enhanced participation of palliative care physicians in these multidisciplinary dialogues could lead to more inclusive decision-making processes, as supported by recent research [18, 19]. The national divergence in practices across Germany reflects an absence of standardization, warranting further research to determine optimal timings for the involvement of palliative care in neurooncological conditions.

According to our survey, a majority of centers report the inclusion of palliative care specialists, yet the timing of this involvement exhibits considerable variation. Approximately half of the centers initiate palliative care at the onset of neurological deterioration, while under one-third incorporate these services at the diagnosis of an incurable condition. Research has demonstrated that early integration of palliative care into cancer management can significantly enhance the quality of life, alleviate symptom burden, and augment satisfaction for both patients and caregivers [20, 21]. Nevertheless, our findings indicate that only a minimal proportion of centers routinely practice early integration, highlighting an area for potential improvement.

The heterogeneity in palliative care practices, especially regarding the timing of intervention, reflects a broader diversity in approaches across the German neurooncological context. It is noteworthy that several prominent neurooncological centers, such as those in Heidelberg and Hamburg, lack certification from the DKG. This absence of DKG certification does not inherently imply a shortfall in the quality or delivery of palliative care but rather may indicate a preference for developing palliative care protocols that diverge from DKG's structured criteria. Such centers may prioritize customized strategies that better align with their distinct patient demographics and institutional goals.

For the successful treatment of physical, psychological, social, and spiritual complaints, their systematic recording is essential. Various German working groups have addressed the establishment of screening for psycho-oncological complaints and their systematic recording [22‐26]. Moreover, systematic recording of psycho-oncological distress using a distress thermometer is considered a quality marker within the framework of the DKG certification of neurooncological centers. Accordingly, the distress thermometer is utilized in 80% of the centers, and a psycho-oncology service is available at all centers. One-fifth of the centers assess quality of life using a corresponding EORTC questionnaire. In addition to psycho-oncological screening, from a palliative medicine perspective, it is also crucial to record symptoms relevant to palliative medicine using a validated questionnaire. Palliative medicine screening is also a new quality marker as part of the DKG-based certification. Twenty-two centers utilized the MIDOS, and 8 centers employed the IPOS. The systematic documentation of palliative medical symptoms in neurooncological patients is gaining increased attention from individual working groups in Germany [27].

The survey results elucidate a notable gap in standardized protocols for spiritual care assessments and therapy, despite the recognized significance of spirituality in the context of life-threatening diseases [28]. This disparity in the provision of psychological and spiritual care prompts examination of potential provider and institutional biases, and accentuates the imperative for further investigation into the systematic standardization of spiritual care practices within neurooncological settings. Additionally, there is an apparent absence of established methodologies for documenting psychological and social complaints, with current practices limited to MIDOS, IPOS, and the Distress Thermometer [29]. As neurooncological care advances, the inclusion of structured spiritual assessments could serve as a pivotal component of a more holistic, patient-centered care paradigm.

The engagement of specialized inpatient or outpatient palliative care appears to be well-established in most centers. In most regions, appropriate specialized outpatient palliative care teams have been established, enabling a seamless transition. Effective oncological and palliative care also involves anticipating potential future symptoms, deteriorations, and emergency situations, and implementing precautions. This aligns with the essential aspect of advanced care planning. Encouragingly, implementation of a palliative care passport was reported at a number of centers, supporting continuity of care and respecting patient autonomy. With regard to advanced care planning, only about one third of the centers reported that this is a routine practice. These findings are in accordance with previous studies. A meta-analysis estimated that fewer than 40% of primary brain tumor patients engaged in end-of-life discussions covering decisions about treatment preferences, health care proxy, palliative care consultation, hospice, and resuscitation wishes before their death [30]. The percentage of patients with a complete advance directive (AD), documenting their wishes and/or appointing a substitute decision-maker, ranged from 0 to 76%. These rates varied significantly among different countries, including within Europe. In a recent Norwegian paper, 78% of brain tumor patients completed palliative care decisions [31]. Previous studies have emphasized the benefits of advanced care planning in improving end-of-life care and reducing hospital admissions and recent recommendation advise early palliative care interventions and advance care planning as part of each disease phase, proactively addressing different patient and caregiver need [32].