Timely integration of specialist palliative home care (SPHC) for patients with congestive heart failure, chronic obstructive pulmonary disease and dementia: qualitative evaluation of the experiences of SPHC physicians in the KOPAL trial.

OBJECTIVE: Chronic non-malignant diseases (CNMDs) are under-represented in specialist palliative home care (SPHC). The timely integration of SPHC for patients suffering from these diseases can reduce hospitalisation and alleviate symptom burdens. An intervention of an SPHC nurse-patient consultation followed by an interprofessional telephone case conference with the general practitioner (GP) was tested in the KOPAL trial ('Concept for strengthening interprofessional collaboration for patients with palliative care needs'). As part of the trial, the aim of this study was to gain in-depth insights into SPHC physicians' perspective on care with and without the KOPAL intervention for patients with congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD) and dementia (D). DESIGN: Qualitative evaluation of the KOPAL intervention from the perspective of SPHC physicians as part of the KOPAL trial. Thematic-focused narrative interviews analysed with grounded theory. SETTING: We conducted the KOPAL study and its qualitative evaluation in Lower Saxony and the greater Hamburg area, Germany. PARTICIPANTS: 11 physicians from 14 SPHC teams who participated in the trial were interviewed. RESULTS: A grounded theory of the necessity of collaboration between GPs and SPHC teams for patients with CHF, COPD and dementia was developed. From the perspective of SPHC physicians, patients with CNMD are generally difficult to manage in GP care. The timing of SPHC initiation is patient-specific, underscoring the need for collaboration between SPHC physicians and GPs. However, the primary mandate for healthcare should remain with GPs. SPHC physicians actively seek collaboration with GPs (eg, through the KOPAL intervention), viewing themselves as advisors for GPs and aspiring to collaborate as equal partners. CONCLUSION: Effective communication and the negotiation of future interprofessional collaboration are essential for SPHC teams. TRIAL REGISTRATION NUMBER: DRKS00017795.

[Identification of regional hospice and palliative care networks in Germany - Results of a multi-method survey]. / Identifikation regionaler Hospiz- und Palliativnetzwerke in Deutschland ­ Ergebnisse einer multimethodischen Bestandserhebung.

INTRODUCTION: In the course of the implementation of the German Healthcare Development Act [Gesundheitsversorgungsweiterentwicklungsgesetz] of 2021, a funding structure according to sect. 39d of the Social Code Book V [SGB V] was established to promote regional hospice and palliative care networks (RHPN). The funded networks are expected to support the multiprofessional cooperation of hospice and palliative care providers at the structural level. It is still unclear how many existing and newly established network structures are eligible for funding according to sect. 39d SGB V and where these network structures are located regionally. The proportion of actually funded networks is also unknown. METHODS: Between January and March 2023, network structures of hospice and palliative care were identified in a tripartite, multi-method survey procedure, consisting of a) research of databases, literature, and internet; b) open quantitative online-survey via SoSciSurvey software, and c) telephone survey of federal offices of health insurers. The data were first documented separately. Then, the research and survey data were combined and analysed via descriptive statistics using SPSS. RESULTS: Based on the aggregated data from the literature-, database- and internet research and the online survey, n=308 network structures of hospice and palliative care could be identified, of which n=37 have applied for network funding according to sect. 39d SGB V. In the survey period, n=47 applications for network funding according to sect. 39d SGB V were submitted to the health insurance funds. There is a high density of network structures in the northern, southern and western federal states, while there are only a few networks in the eastern states. According to the online-survey, 56% (n=136) of all the identified network structures with known sponsorship are organised by providers of specialised outpatient palliative care. 47% (n=29) of the networks with funding interest are organised as independent structures. Of the network structures with known funding status, 18% (n=26) plan to apply for funding according to sect. 39d SGB V in 2024 for the first time. DISCUSSION: There are numerous network structures in hospice and palliative care, but they are differently distributed among the German federal states. The multi-method survey was able to provide a first nation-wide inventory of network structures as well as an assessment of networks with funding interest according to sect. 39 SGB V. A clear distinction between general network structures and structural networks according to sect. 39d SGB V is a challenge. In the next years the number of funding applications is expected to rise. CONCLUSION: The identification of existing and funded network structures of hospice and palliative care in Germany can be a starting point for a deeper analysis of the structure and the activities of the networks. A quality assessment tool that takes into account both the heterogeneity of the networks and the different dimensions of networking would be helpful.

Status exploration and analysis of regional hospice and palliative care networks in Germany: A protocol for a mixed-methods study.

BACKGROUND: Multi-professional cooperation between healthcare providers is a key quality criterion of hospice and palliative care. While hospice and palliative care networks can support cooperation on a local level, opportunities for wider cooperation through the establishment and development of regional hospice and palliative care networks in Germany have not yet been explored systematically. AIMS: The HOPAN study aims at: (1) identifying regional hospice and palliative care networks in Germany, (2) analysing these networks using an adapted quality assessment tool, and (3) proposing setting-sensitive recommendations for network development and exploring the benefits of these recommendations. METHODS: HOPAN is a prospective, observational, mixed-methods study comprising three work packages (WPs). In WP1, the stock of regional hospice and palliative care networks in Germany will be identified via database, literature, and internet research. In WP2a, focus groups will be conducted to adapt an existing maturity model for healthcare networks to regional hospice and palliative care networks. In WP2b, a questionnaire will be sent to each identified regional hospice and palliative care network to gain insight into their structure and status of development. In WP2c, group discussions will be conducted to develop setting-sensitive recommendations for these networks. Finally, in WP3, these recommendations will be sent to all participating hospice and palliative care networks, and the benefits of the recommendations will be evaluated via a questionnaire. DISCUSSION: Empirically developed setting-sensitive recommendations should enable the systematic establishment and management of regional hospice and palliative care networks in Germany, considering the specific needs and potential of each network. The study findings are expected to improve the overall development of hospice and palliative care services. TRIAL REGISTRATION: The study was prospectively registered in the German Clinical Trials Register (Deutsches Register Klinischer Studien) (Registration N° DRKS00030629; date of registration: 02 November 2022). The study is searchable under the International Clinical Trials Registry Platform Search Portal of the World Health Organization, under the German Clinical Trials Register number.

How continuity of care is experienced within the context of integrated palliative care: A qualitative study with patients and family caregivers in five European countries.

BACKGROUND: Patients with advanced diseases often experience deficient continuity of care. Although integrated palliative care promotes continuity of care, it is not clear how it can be optimized to improve continuity of care experiences. AIM: To examine how relational, informational and management continuity of care are experienced by patients with advanced diseases and their family caregivers receiving care from several integrated palliative care initiatives in five European countries. DESIGN: We adopted a longitudinal qualitative study design including two interviews (interval 3 months) with patients and family caregivers focusing on how health care professionals responded to their needs. Interviews were audio-recorded and transcribed verbatim. Analysis involved a two-step qualitative content approach. SETTING/PARTICIPANTS: A total of 22 integrated palliative care initiatives (established local palliative care collaborations) were selected in Belgium, Germany, Hungary, the Netherlands and the United Kingdom. We recruited 152 patients (63% cancer, 24% chronic obstructive pulmonary disease, 13% heart failure; life expectancy <1 year; mean age 68 years, 56% female) and 92 family caregivers (mean age 61 years, 66% female). RESULTS: Trusted relationships with a small number of key health care professionals to receive tailored care and easily access help were essential. Relational continuity was often deficient, especially with general practitioners. Although informational and management continuity was often lacking in care provision, collaborative integrated palliative care initiatives were related to consistent and coherent care. CONCLUSION: Patients and family caregivers most likely experience continuity of care by having a small number of trusted health care professionals who are available, provide multidisciplinary care and regularly transfer information to all health care professionals involved. Optimizing continuity of care requires further integration of integrated palliative care initiatives with other health care professionals involved in the patients' care networks.

["He is not that important anymore" : General practitioners in a specialized palliative home care setting from a patient's point of view]. / "Der spielt im Moment nicht mehr ganz die Rolle" : Der Hausarzt in der spezialisierten ambulanten Palliativversorgung aus Patientenperspektive.

BACKGROUND: The outpatient medical care of palliative patients (PPs) has always fallen within the duties of general practitioners. Since the specialized palliative out-patient care (SAPV) legislation in 2007 palliative home care teams (PCTs) were established, providing holistic medical, nursing, and psychosocial support for patients with life-limiting illness and their care providers. OBJECTIVES: The article explores the role of GPs in palliative home care settings with PCTs from the patient's perspective. MATERIALS AND METHODS: From December 2014 to January 2015 we conducted 23 qualitative, semi-structured interviews with severely ill patients receiving specialist palliative care at home in Germany. The theory-based analysis followed the qualitative content analysis according to Mayring. RESULTS: The expectations of PPs towards their GP in integrated palliative care were influenced by individual criteria such as availability, intensity and duration of the doctor-patient-relationship. In relation to the quality of the long-term relationship and more specifically for basic medical care GPs still play an important role. On the other hand, PCTs are becoming increasingly important. In addition to the pain-management and symptom control responsibilities, they meet the daily care needs of PPs and their caregivers by coordinating the care network as well as providing psychosocial support and 24/7-care. CONCLUSIONS: Shifting of traditional tasks from GPs to PCTs influences the role of the GP. PCTs can unburden the GP from unrealistic expectations and improve the patients' quality of life. However, this leads to a tendency for reduced importance of the GP.