Adaptation of the Australian Palliative Care Phase concept to the German palliative care context: a mixed-methods approach using cognitive interviews and cross-sectional data.

BACKGROUND: Palliative care phases (stable, unstable, deteriorating, terminal and bereavement) are routinely used in Australia and the UK to describe the clinical situation of patients and their families and to evaluate the associated care plan. In addition, it serves as a benchmark developed by the Australian Palliative Care Outcome Collaboration (PCOC) and is used nationwide for comparisons between services. In Germany, the concept is not used consistently due to various translations. Furthermore, there is no nationwide systematic approach to routinely assess clinical outcomes in palliative care. The study aims to develop a German version of the palliative care phase definitions by adapting them culturally, and to examine the inter-rater reliability of the adjusted definitions with healthcare professionals. METHODS: Mixed-methods approach: Cognitive interview study using 'think aloud' and verbal probing techniques and a consecutive multi-center cross-sectional study with two clinicians independently assigning the phase definitions. Interviewees/participants were selected through convenience and purposive sampling in specialist palliative care inpatient units, advisory and community services and in three specialist palliative care units with doctors, nursing staff and allied health professionals. RESULTS: Fifteen interviews were conducted. Identified difficulties were: Some translated terms were 1) not self-explanatory (e.g. 'family/carer' or 'care plan') and (2) too limited to the medical dimension neglecting the holistic approach of palliative care. (3) Problems of comprehension regarding the concept in general occurred, e.g. in differentiating between the 'unstable' and 'deteriorating' phase. Inter-rater reliability was moderate (kappa = 0.44; 95% CI = 0.39-0.52). The assignment of the phase 'deteriorating' has caused the most difficulties. CONCLUSION: Overall, the adapted palliative care phases are suitable to use in the German specialist palliative care setting. However, the concept of the phases is not self-explanatory. To implement it nationwide for outcome measurement/benchmarking, it requires further education, on-the-job training and experience as well as the involvement of healthcare professionals in implementation process. For the use of international concepts in different healthcare systems, a deeper discussion and cultural adaptation is necessary besides the formal translation.

Integration of oncology and palliative care: a Lancet Oncology Commission.

Full integration of oncology and palliative care relies on the specific knowledge and skills of two modes of care: the tumour-directed approach, the main focus of which is on treating the disease; and the host-directed approach, which focuses on the patient with the disease. This Commission addresses how to combine these two paradigms to achieve the best outcome of patient care. Randomised clinical trials on integration of oncology and palliative care point to health gains: improved survival and symptom control, less anxiety and depression, reduced use of futile chemotherapy at the end of life, improved family satisfaction and quality of life, and improved use of health-care resources. Early delivery of patient-directed care by specialist palliative care teams alongside tumour-directed treatment promotes patient-centred care. Systematic assessment and use of patient-reported outcomes and active patient involvement in the decisions about cancer care result in better symptom control, improved physical and mental health, and better use of health-care resources. The absence of international agreements on the content and standards of the organisation, education, and research of palliative care in oncology are major barriers to successful integration. Other barriers include the common misconception that palliative care is end-of-life care only, stigmatisation of death and dying, and insufficient infrastructure and funding. The absence of established priorities might also hinder integration more widely. This Commission proposes the use of standardised care pathways and multidisciplinary teams to promote integration of oncology and palliative care, and calls for changes at the system level to coordinate the activities of professionals, and for the development and implementation of new and improved education programmes, with the overall goal of improving patient care. Integration raises new research questions, all of which contribute to improved clinical care. When and how should palliative care be delivered? What is the optimal model for integrated care? What is the biological and clinical effect of living with advanced cancer for years after diagnosis? Successful integration must challenge the dualistic perspective of either the tumour or the host, and instead focus on a merged approach that places the patient's perspective at the centre. To succeed, integration must be anchored by management and policy makers at all levels of health care, followed by adequate resource allocation, a willingness to prioritise goals and needs, and sustained enthusiasm to help generate support for better integration. This integrated model must be reflected in international and national cancer plans, and be followed by developments of new care models, education and research programmes, all of which should be adapted to the specific cultural contexts within which they are situated. Patient-centred care should be an integrated part of oncology care independent of patient prognosis and treatment intention. To achieve this goal it must be based on changes in professional cultures and priorities in health care.

Early palliative care: current status of integration within German comprehensive cancer centers.

PURPOSE: The aim of this study is to describe how models of early integration (EI) of specialized palliative care (SPC) are applied to German comprehensive cancer center (CCCs). METHODS: Heads of SPC departments of the 15 German CCCs were asked by email to describe the situation of early SPC in their CCC. The responses were analyzed using MAXQDA. RESULTS: Thirteen answers were allowed to be analyzed. Most of the department heads report that EI models of SPC are partially applied in the CCC (responses with "yes" or "partly," n = 10). Though they often describe that the models' implementation needs optimization and depends on temporary and financial restrictions or it has a pilot character. Models compromise structures like SPC unit, inpatient/outpatient SPC consultation team, and participation of members of SPC team in tumor boards. Moreover, other EI models of SPC quoted by the participants were standard operating procedures (SOP), screening tools, and information material for physicians, patients, and their related persons. CONCLUSIONS: Currently, German CCC models of EI of SPC are not applied in a standardized way. Approaches are still very diverse.

[Palliative care for patients with Turkish or Arabic migration background in Lower Saxony : A survey from palliative care professionals' perspective]. / Palliative Versorgung von Menschen mit türkischem oder arabischem Migrationshintergrund in Niedersachsen : Eine Befragung spezialisierter Palliativversorger.

BACKGROUND AND OBJECTIVES: People with a migration background (MB) are an important part of German society. If and how they use specialised palliative care (SPC) has not been studied. We aimed to assess the current SPC for patients with Turkish or Arabic MB (the largest group of immigrants in Germany with a shared ascribed culture) from the point of view of healthcare professionals (HCP) in Lower Saxony. METHOD: All HCPs in institutions providing SPC (n = 90) were invited to participate in an anonymous online survey which contained closed and open questions about care for this patient group, characteristics of the last patient with Turkish or Arabic MB they cared for, and resources and strategies to care for these patients. The survey was analysed using descriptive statistics and qualitative content analysis. RESULTS: Fifty-five HCPs in SPC participated, mostly nurses aged between 40 and 60 years. One fifth had not cared for a patient with Turkish or Arabic MB during the last 12 months. Given their local population, 84.6% estimated that they cared for a lower number of patients than would be representative. In care, problems with communication as well as difficulties to interact with and manage families, and in organising and planning care were most prevalent. Only 21% of participants had access to interpreters. DISCUSSION: Patients with Turkish or Arabic MB seem to be underrepresented in SPC. The high rate of communication problems highlights the necessity of reliable and accessible interpreter services. Most difficulties were of psychosocial nature, showing how important the holistic approach of SPC is in caring for terminally ill patients with Turkish or Arabic MB.

[The current situation of palliative medicine in Germany--clinical implications, education and research]. / Palliativmedizin--Aktueller Stand in Klinik, Forschung und Lehre.

Palliative medicine (or palliative care, referring to its multi-professional character) denotes a comprehensive care concept for patients suffering from incurable and progressive disease, and their relatives. Specialized support structures are necessary, including (inpatient) palliative care units, (inpatient) consultation services, and (outpatient) specialized palliative home care services. Further, research and education is mandatory in order to gain and to spread this particular expertise and attitude. This contribution focuses on the current situation and on the development of palliative care structures in Germany.

Outcome indicators in palliative care--how to assess quality and success. Focus group and nominal group technique in Germany.

PURPOSE: The call for clinically relevant outcome criteria has been raised, as assessment of adequate quality of service providers is essential with increasing momentum in the development of palliative care in most European countries. The aim of this study is to investigate important dimensions and indicators for assessment and evaluation of palliative care from the perspective of multi-disciplinary German experts working over years in the field of palliative care. METHODS: A focus group, using the structured consensus method of the improved nominal group technique (INGT), with nine experts from different disciplines was conducted in Germany. RESULTS: An abundance of topics (16) were identified, pointing at the complexity of the issue. Main topics were: quality of life, needs assessments of patients and relatives, resource assessment, surveillance of decision-making processes, as well as spiritual well-being. The following properties were claimed as essential for outcome criteria sensitivity, without additional burden on patients, easy applicability, scientific validity, and helpful for communication within the team, ethical discussions as well as for quality management. CONCLUSIONS: The study identified topics considered important by experts in clinical practise. The discussions exposed the diversity of demands on outcome assessment put up by different stakeholder groups. This and the high number of relevant items show the complexity for the agreement on a unique set of outcome criteria. Further research considering other perspectives is needed.