Sequential use of the Demoralization Scale in palliative care: feasibility, strain, and personal benefits of participation for patients at the end of life.

PURPOSE: To determine the efficacy of specifically targeted interventions in palliative care, sequential use of the Demoralization Scale (DS) could be a useful approach. This study's main objective was to evaluate the weekly use of the DS for palliative care inpatients. Secondary objectives were the analysis of the DS, self-perceived strain, and personal benefits of the assessment. METHODS: Patients admitted to 3 palliative care units (PCUs) were tested for eligibility and asked to complete the DS weekly. Self-perceived strain was rated on a numeric scale (0-10). Open questions about strain and helpfulness of the survey were asked. RESULTS: Over 10 months, 568 patients were admitted to the PCUs; 193 patients were eligible. A total of 120 patients participated once, of whom only 41 (34.1%) participated at least twice. The mean self-perceived strain caused by the assessment was 1.53 at T1 (N = 117, SD = 2.27, max = 8). CONCLUSIONS: While the single use of the DS in PCUs seems justified in view of the possibility to detect severe demoralization with overall low to moderate strain and self-perceived helpfulness for patients, the feasibility of the sequential use of the DS has to be regarded critically. Our study undermines the complexity of assessing changes in self-reported psychological phenomena with end-of-life patients at a PCU. The most limiting factors for participating twice were that patients were either discharged from hospital or declined further participation.

Which Reimbursement System Fits Inpatient Palliative Care? A Qualitative Interview Study on Clinicians' and Financing Experts' Experiences and Views.

Context: Internationally, a variety of reimbursement systems exists for palliative care (PC). In Germany, PC units (PCUs) may choose between per-diem rates and diagnosis-related groups (DRGs). Both systems are controversially discussed. Objectives: To explore the experiences and views of German PCU clinicians and experts for PCU financing regarding per-diem rates and DRGs as reimbursement systems with a focus on (1) cost coverage, (2) strengths and weaknesses of both financing systems, and (3) options for further development of funding PCUs. Design: Qualitative semistructured interviews with PCU clinicians and experts for PCU financing, analyzed by thematic analysis using the Framework approach. Setting/Subjects/Measurements: Ten clinicians and 13 experts for financing were interviewed June-October 2015 on both reimbursement systems for PCU. Results: Interviewees had divergent experiences with both reimbursement systems regarding cost coverage. A described strength of per-diem rates was the perceived possibility of individual care without direct financial pressure. The nationwide variation of per-diem rates and the lack of quality standards were named as weaknesses. DRGs were criticized for incentives perceived as perverse and inadequate representation of PC-specific procedures. However, the quality standards for PCUs required within the German DRG system were described as important strength. Suggestions for improvement of the funding system pointed toward a combination of per-diem rates with a grading according to disease severity/complexity of care. Conclusions: Expert opinions suggest that neither current DRGs nor per-diem rates are ideal for funding of PCUs. Suggested improvements regarding adequate funding of PCUs resemble and supplement international developments.

Understanding complexity - the palliative care situation as a complex adaptive system.

BACKGROUND: The concept of complexity is used in palliative care (PC) to describe the nature of patients' situations and the extent of resulting needs and care demands. However, the term or concept is not clearly defined and operationalised with respect to its particular application in PC. As a complex problem, a care situation in PC is characterized by reciprocal, nonlinear relations and uncertainties. Dealing with complex problems necessitates problem-solving methods tailored to specific situations. The theory of complex adaptive systems (CAS) provides a framework for locating problems and solutions. This study aims to describe criteria contributing to complexity of PC situations from the professionals' view and to develop a conceptual framework to improve understanding of the concept of "complexity" and related elements of a PC situation by locating the complex problem "PC situation" in a CAS. METHODS: Qualitative interview study with 42 semi-structured expert (clinical/economical/political) interviews. Data was analysed using the framework method. The thematic framework was developed inductively. Categories were reviewed, subsumed and connected considering CAS theory. RESULTS: The CAS of a PC situation consists of three subsystems: patient, social system, and team. Agents in the "system patient" are allocated to further subsystems on patient level: physical, psycho-spiritual, and socio-cultural. The "social system" and the "system team" are composed of social agents, who affect the CAS as carriers of characteristics, roles, and relationships. Environmental factors interact with the care situation from outside the system. Agents within subsystems and subsystems themselves interact on all hierarchical system levels and shape the system behaviour of a PC situation. CONCLUSIONS: This paper provides a conceptual framework and comprehensive understanding of complexity in PC. The systemic view can help to understand and shape situations and dynamics of individual care situations; on higher hierarchical level, it can support an understanding and framework for the development of care structures and concepts. The framework provides a foundation for the development of a model to differentiate PC situations by complexity of patients and care needs. To enable an operationalisation and classification of complexity, relevant outcome measures mirroring the identified system elements should be identified and implemented in clinical practice.

Redefining diagnosis-related groups (DRGs) for palliative care - a cross-sectional study in two German centres.

BACKGROUND: Hospital costs and cost drivers in palliative care are poorly analysed. It remains unknown whether current German Diagnosis-Related Groups, mainly relying on main diagnosis or procedure, reproduce costs adequately. The aim of this study was therefore to analyse costs and reimbursement for inpatient palliative care and to identify relevant cost drivers. METHODS: Two-center, standardised micro-costing approach with patient-level cost calculations and analysis of the reimbursement situation for patients receiving palliative care at two German hospitals (7/2012-12/2013). Data were analysed for the total group receiving hospital care covering, but not exclusively, palliative care (group A) and the subgroup receiving palliative care only (group B). Patient and care characteristics predictive of inpatient costs of palliative care were derived by generalised linear models and investigated by classification and regression tree analysis. RESULTS: Between 7/2012 and 12/2013, 2151 patients received care in the two hospitals including, but not exclusively, on the PCUs (group A). In 2013, 784 patients received care on the two PCUs only (group B). Mean total costs per case were € 7392 (SD 7897) (group A) and € 5763 (SD 3664) (group B), mean total reimbursement per case € 5155 (SD 6347) (group A) and € 4278 (SD 2194) (group B). For group A/B on the ward, 58%/67% of the overall costs and 48%/53%, 65%/82% and 64%/72% of costs for nursing, physicians and infrastructure were reimbursed, respectively. Main diagnosis did not significantly influence costs. However, duration of palliative care and total length of stay were (related to the cost calculation method) identified as significant cost drivers. CONCLUSIONS: Related to the cost calculation method, total length of stay and duration of palliative care were identified as significant cost drivers. In contrast, main diagnosis did not reflect costs. In addition, results show that reimbursement within the German Diagnosis-Related Groups system does not reproduce the costs adequately, but causes a financing gap for inpatient palliative care.

Resource allocation issues concerning early palliative care.

BACKGROUND: The concept of early palliative care (ePC) has received enormous recognition in the field of cancer care. Increasing evidence supports this approach, but outside the research arena, the implementation of sustainable clinical concepts rely on solutions for practical problems such as funding issues. Therefore, the article presented here discusses economic considerations associated with different concepts of ePC. MAIN POINTS: The specialist approach: the most frequently cited ePC trials assessing examine the concurrent provision of specialist palliative care in addition to routine care. Most of this specialist palliative care has been provided by multiprofessional teams in an outpatient setting of tertiary care centers. A number of the research groups have also provided data about the resource utilizations of this approach. From this, a rough estimate of the cost of early specialist palliative care can be derived. Yet, in many parts of North-America, Europe and other regions, funding modes for such outpatient specialist palliative care is non-existent. Recent studies have pointed out that ePC for inpatients is associated with cost-savings. These cost savings are even more pronounced the earlyer specialist palliative care is integrated in the care for the patients. Strengthening of general palliative care: most institutions recommend that palliative care as an approach should be strengthened as a part of standard care. To accomplish this, different measures such as teaching of general palliative care competencies of oncology teams, routine symptom assessment or the mandatory implementation of advanced care planning in care trajectories are being promoted. Due to the heterogeneity of these approaches, cost calculations are difficult, but can be weight against cost-saving estimated associated with for example less utilization of futile diagnostic and therapeutic procedures. CONCLUSIONS: Researchers, health care providers and policy makers need to distinguish the different concepts behind ePC before providing cost estimates. Detailed information is provided in this article. From our view, it is evident that neither of the two approaches (general vs. specialist) can be a one-or-the-other choice. Successful ePC will most likely rely on a joint effort of all medical disciplines and profession in close cooperation and early integration of specialist PC services. For such an approach, additional resources may be necessary, but from the public health perspective, cost-savings can also be assumed.

Assessing somatic, psychosocial, and spiritual distress of patients with advanced cancer: development of the Advanced Cancer Patients' Distress Scale.

OBJECTIVE: For adequate distress assessment in palliative care, we developed a screening evaluation tool. METHODS: Proven methods of scale construction led to a 53-item pilot form of the Advanced Cancer Patients' Distress Scale (ACPDS). We used Hornheide Questionnaire (HQ), Palliative Outcome Scale (POS), and Minimal Documentation System (MIDOS) for validation. Advanced cancer patients (N = 168) from 3 centers for palliative medicine (aged 23-89, 51% female) filled out the questionnaire. RESULTS: With a principal component analysis (PCA), we extracted 5 distress scales (emotional reactions/physical restrictions, communication deficits, negative social reactions, pain, and gastrointestinal symptoms). Internal consistencies varied between medium (.52) and very good (.88). Positive validity scores were found. CONCLUSIONS: Using the ACPDS may help to identify needs for palliative care interventions and enhance the quality of palliative care.