National strategy for palliative care of severely ill and dying people and their relatives in pandemics (PallPan) in Germany - study protocol of a mixed-methods project.

BACKGROUND: In the SARS-CoV-2 pandemic, general and specialist Palliative Care (PC) plays an essential role in health care, contributing to symptom control, psycho-social support, and providing support in complex decision making. Numbers of COVID-19 related deaths have recently increased demanding more palliative care input. Also, the pandemic impacts on palliative care for non-COVID-19 patients. Strategies on the care for seriously ill and dying people in pandemic times are lacking. Therefore, the program 'Palliative care in Pandemics' (PallPan) aims to develop and consent a national pandemic plan for the care of seriously ill and dying adults and their informal carers in pandemics including (a) guidance for generalist and specialist palliative care of patients with and without SARS-CoV-2 infections on the micro, meso and macro level, (b) collection and development of information material for an online platform, and (c) identification of variables and research questions on palliative care in pandemics for the national pandemic cohort network (NAPKON). METHODS: Mixed-methods project including ten work packages conducting (online) surveys and qualitative interviews to explore and describe i) experiences and burden of patients (with/without SARS-CoV-2 infection) and their relatives, ii) experiences, challenges and potential solutions of health care professionals, stakeholders and decision makers during the SARS-CoV-2 pandemic. The work package results inform the development of a consensus-based guidance. In addition, best practice examples and relevant literature will be collected and variables for data collection identified. DISCUSSION: For a future "pandemic preparedness" national and international recommendations and concepts for the care of severely ill and dying people are necessary considering both generalist and specialist palliative care in the home care and inpatient setting.

[Palliative sedation : Development and consensus of a German language documentation template]. / Palliative Sedierung : Entwicklung und Konsentierung einer deutschsprachigen Dokumentationsvorlage.

BACKGROUND: Palliative sedation (PS) serves as a therapeutic option in cases of otherwise intractable suffering. As the use of sedative and hypnotic medication in many diverse situations is a core competency of anesthesiology, anesthesiologists are confronted with questions of sedative therapy at the end of life in institutions for specialized palliative care, in intensive care units and intermediate care wards. In recent years a number of guidelines have been published internationally but so far no official guidelines exist in Germany. The most recognized document is the European Association for Palliative Care (EAPC) framework on PS. This project aims to develop a German language template for the preparation, application, documentation and evaluation of PS according to the current frameworks, especially the EAPC framework on PS. METHODS: A first draft of the template was generated by the project team using the EAPC framework and individual templates of various institutions, which had been collected during a previous project. Professionals (n = 136) from inpatient and outpatient specialist palliative and hospice care were invited to assess all items of the draft regarding "relevance", "wording" and "feasibility" in an online Delphi survey (Unipark®, Questback, Cologne, Germany). After the second Delphi round an expert panel was asked to reflect the results and generate a final draft. Approval was granted if acceptance exceeded 75% of participants. RESULTS: The 3 rounds of the Delphi process were completed by 64, 46 and 41 participants, respectively. The Delphi process as well as the expert panel led to significant changes of the template. The indications for PS had to be clarified. The significance of documentation of vital parameters, such as oxygen saturation, blood pressure or respiratory rate during PS was intensively discussed. In many teams, predominantly hospice or outpatient palliative care teams, it seems to be difficult to measure these parameters or it is regarded as inappropriate in a palliative care setting. In contrast, the EAPC framework recommends monitoring of vital parameters in cases of intermittent or respite sedation. Finally, a solution was found to support documentation of additional data without the explicit mentioning of specific parameters. After the third Delphi round, all 16 items of the documentation template reached consensus with respect to relevance (82.9-100%), clarity of wording (80.5-100%), and feasibility in practice (78-100%). CONCLUSION: This article provides an empirically based, multiprofessional consented documentation template for PS. Core elements of the documentation of PS are the indications and the decision process towards PS. During the treatment, at least the level of sedation and the symptom burden have to be recorded. The documentation of vital signs during PS remains a highly disputed topic. The presented data suggest that especially in outpatient settings and in hospices measuring and documentation of vital parameters is uncommon and therefore is often regarded as not feasible. This template can help to support the medically and ethically sound use of PS and facilitate research. The template can be accessed at http://www.palliativmedizin.uk-erlangen.de/forschung/downloads/ .

[Standard operating procedures (SOPs) for palliative care : Presence and relevance of palliative SOPs within the network of German Comprehensive Cancer Centers (CCCs) funded by the German Cancer Aid]. / Standard Operating Procedures (SOPs) in der Palliativmedizin : Vorhandensein und Relevanz palliativmedizinischer SOPs in den von der Deutschen Krebshilfe geförderten Comprehensive Cancer Centers (CCCs).

BACKGROUND: Standard operating procedures (SOPs) can contribute to the improvement of patient care. OBJECTIVES: Survey the presence and relevance of SOPs for palliative care (PC) within the network of German Comprehensive Cancer Centers (CCCs) funded by the German Cancer Aid. MATERIALS AND METHODS: In a descriptive survey, palliative care services within 15 CCCs funded by the German Cancer Aid were asked to rate availability and thematic relevance of (1) symptom-related, (2) clinical pathways and (3) measures- and processes-oriented SOPs using a structured questionnaire. RESULTS: Pain management SOPs were the most common (n =11; 73 %). The most thematic relevance showed SOPs dedicated to pain management, care in the last days of life and delirium and other neuro-psychiatric diseases (each n =13; 87 %), followed by bowel obstruction, dyspnoea, nausea and palliative sedation (each n =12; 80 %). CONCLUSIONS: There is a wide gap between availability and perceived relevance of palliative care SOPs within the network of German CCCs funded by the German Cancer Aid. It is obvious that there is a need for further development of relevant SOPs in palliative care.

[Characteristics of Patients with Breathlessness]. / Charakteristika von Palliativpatienten mit Atemnot.

Background Breathlessness is a common and distressing symptom in patients with advanced life-limiting disease. The aim of this study was to describe demographical and clinical characteristics of patients with breathlessness in Germany. Methods We conducted a secondary analysis of hospice and palliative care inpatient data from 2006 to 2008. The Hospice and Palliative Care Evaluation (HOPE) is an annual prospective German survey, that includes a validated 16-item symptom-and-problem checklist (severity score 0 - 3). Characteristics of patients with or without breathlessness were compared in a pure descriptive manner. Interpretation of given p-values takes the error inflation due to multiple testing into account. Results Breathlessness was recorded in 2860/5320 (53.8 %) patients (mean age 67.2 years (SD 12.4), 51.4 % female, 93.6 % malignant disease (female/male lung cancer 15.7/29.5 %, breast cancer 20.3/0.3 %, colon 10.3/8.7 %). Breathless patients compared with those without breathless ness had a significantly worse functional status (ECOG 3 - 4: 78.4 % vs. 70.8 %, p < 0.001), suffered from a larger number (11.1 vs. 9.5, p < 0.001) of symptoms and the symptoms were of higher intensity (except confusion). Breathless patients had a higher risk to die during inpatient stay (43.5 % vs. 32.4 %, p < 0.001). Conclusion Based on this large sample of hospice and palliative care inpatients, breathlessness is associated with a high symptom burden and shortened survival. Breathless patients need more attention in health care.

Desire for hastened death: how do professionals in specialized palliative care react?

OBJECTIVE: Desires for hastened death (DHD; wish to hasten death is also in use) are prevalent in terminally ill patients. Studies show that health professionals (HP) are often underprepared when presented with DHD. HPs in specialized palliative care (SPC-HP) often encounter DHD. This study aimed to identify SPC-HP responses to DHD in daily practice and their corresponding functions. METHODS: Narrative interviews were conducted with 19 SPC-HPs at four German University Hospitals. Transcripts were analyzed using the documentary method. An inventory of established responses to DHD was compiled, and their corresponding functions in the context of the patient-SPC-HP interaction were reconstructed. RESULTS: Twelve response categories and six corresponding functions were identified. On the patient level, responses categorized as symptom control, exploring the reasons and generating perspective, reorientation, and hope were particularly used to ease the patient's burden. On the interaction level, creating a relationship was fundamental. On the SPC-HP level, various methods served the functions self-protection and showed professional expertise. CONCLUSIONS: Profound personal and professional development is necessary to respond to the inherent challenges presented by DHD. Establishing helpful relationships with patients is essential regardless of SPC-HP specialization. SPC-HPs should maximize their skills in establishing and maintaining relationships as well as strengthening their own resilience, possibly in specific training courses.

[Comparison of Patients and their Care in Urban and Rural Specialised Palliative Home Care - A Single Service Analysis]. / Retrospektive Datenanalyse von Patienten in der Spezialisierten Ambulanten Palliativversorgung (SAPV) - Vergleich zwischen Stadt und Landkreis.

BACKGROUND: Specialised outpatient palliative care teams (in Germany called SAPV) aim to ensure best possible end-of-life care for outpatients with complex needs. Information on the influence of living areas (rural vs. urban) on patient and care related aspects is rare. This study aims to explore differences between palliative care patients in urban and rural dwellings concerning their nursing and service characteristics. METHODS: A retrospective data analysis of documentary data for 502 patients supplied by SAPV team from December 2009 to June 2012 was conducted. Patients and care characteristics were investigated by frequency analysis and were compared for both groups of urban and rural dwelling patients (T test, Chi², Fisher's exact test p < 0.05). RESULTS: 387 complete data sets could be included. Urban (n=197) and rural (n=190) dwelling patients were almost equally sized groups. The mean age of the whole sample was 74.5 years, 55.3% were female. Most patients were diagnosed with cancer (76.8%). No significant differences in urban and rural dwelling patients concerning most demographics, care, disease and service related aspects of palliative home care could be detected. An exception is that the rate of re-admittance to hospital is higher for rural dwelling patients (Fisher's exact test p=0.022). CONCLUSIONS: Although predominantly presumed, the single service analysis shows - except for the re-admittance rate to hospital - no considerable differences between palliative care patients regarding their living area. Our findings indicate that patients cared for in rural and urban settings have similar needs and impose similar requirements on palliative care teams.

"It's Not that Easy"--Medical Students' Fears and Barriers in End-of-Life Communication.

This study aims to assess and improve communication education for medical students in palliative care (PC) with the use of simulated patients (SP) in Germany. More specifically, to explore how students evaluate the use of SP for end-of-life communication training and which fears and barriers arise. A pilot course was implemented. Qualitative content analysis was used to analyse transcribed recordings of the course. Pre- and post-course questionnaires containing open-ended questions ascertained students' motivation for participating, their preparation within their degree programme and whether they felt they had learned something important within the course. Seventeen medical students in their third to fourth year of education (age 22-31) participated in the five-session course and answered the questionnaires (pre n = 17, post n = 12). Students felt insufficiently prepared and insecure. Discussing end-of-life issues was experienced as challenging and emotionally moving. Within the conversations, although students sometimes showed blocking behaviour in reaction to emotional impact, they valued the consideration of emotional aspects as very important. The course was overall highly appreciated and valued as being helpful. The communication situation with the SP was perceived as authentic. Ten out of 12 students confirmed to have learned something important (post course). Our results indicate an urgent need for better communication training for medical students. Due to the fact that bedside teaching in PC is not feasible for all students, training with standardized SP can be a way to generate an authentic learning situation. Techniques to address fears and blocking behaviour should, however, also be considered.

The OUTREACH study: oncologists of German university hospitals in rotation on a palliative care unit-evaluation of attitude and competence in palliative care and hospice.

PURPOSE: The effect of the duration of an educational rotation presented at a palliative care unit on the palliative care knowledge gain and the increase of palliative care self-efficacy expectations are unclear. METHODS: This national prospective multicenter pre-post survey conducted at twelve German University Comprehensive Cancer Centers prospectively enrolled physicians who were assigned to training rotations in specialized palliative care units for three, six, or twelve months. Palliative care knowledge [in %] and palliative care self-efficacy expectations [max. 57 points] were evaluated before and after the rotation with a validated questionnaire. RESULTS: From March 2018 to October 2020, questionnaires of 43 physicians were analyzed. Physicians participated in a 3- (n = 3), 6- (n = 21), or 12-month (n = 19) palliative care rotation after a median of 8 (0-19) professional years. The training background of rotating physicians covered a diverse spectrum of specialties; most frequently represented were medical oncology (n = 15), and anesthesiology (n = 11). After the rotation, median palliative care knowledge increased from 81.1% to 86.5% (p < .001), and median palliative care self-efficacy expectations scores increased from 38 to 50 points (p < .001). The effect of the 12-month rotation was not significantly greater than that of the 6-month rotation. CONCLUSION: An educational rotation presented in a specialized palliative care unit for at least six months significantly improves palliative care knowledge and palliative care self-efficacy expectations of physicians from various medical backgrounds.

Outcome assessment instruments in palliative and hospice care--a review of the literature.

BACKGROUND: As different definitions for PC have been used across the last three decades, a common terminology is lacking. To ensure quality of care, (a) a consensus on outcome criteria and indicators and (b) validated and applicable outcome assessment instruments are necessary. The aim of this study is to systematically review instrument for outcome assessment that have been used or proposed for research and clinical practice in palliative care. METHOD: A systematic literature search in electronic databases Cinahl, MEDLINE, EMBASE, and PsychoINFO until December 2009 was conducted to identify articles describing outcome assessment in palliative care. Following extraction of relevant publications, the outcome assessment instruments were categorized in outcome domains and target groups. RESULTS: The literature search resulted in 8,607 hits. Deduplication and exclusion of irrelevant or unavailable publications allowed for 725 publications which were analyzed in detail. At least 528 different outcome assessment instruments were applied. Four target groups were identified: patients, family members, staff members, and the health care system. Fifteen patient domains were identified: quality of life, quality of care, symptoms and problems, performance status, psychological symptoms, decision-making and communication, place of death, stage of disease, mortality and survival, distress and wish to die, spirituality and personality, disease-specific outcomes, clinical features, meaning in life, and needs. The majority of instruments were found only in single cases and a minority of instruments were validated. Validated instruments were used more often. CONCLUSIONS: The wide scope of existing instruments makes consensus on a universal set of instruments for outcome assessment in palliative care improbable. A framework with a set of appropriate instruments could help (1) to harmonize the variety of tools used in research and clinical practice, (2) to allow for more comparability, and (3) to define gaps were tools maybe missing and should be developed.

[Pharmacological treatment of malignant bowel obstruction in severely ill and dying patients : a systematic literature review]. / Medikamentöse therapie der gastrointestinalen obstruktion bei schwerkranken und sterbenden patienten : eine systematische literaturübersicht.

BACKGROUND: Malignant bowel obstruction (MBO) occurs in 3-6% of patients suffering from advanced cancer. The incidence of MBO is highest in patients with gynaecological and colorectal malignancies. Typical symptoms include nausea, vomiting, abdominal pain and constipation. Initially, these symptoms may be isolated and sporadic, becoming more and more intense later on. The suggested treatment includes surgical, interventional and pharmacological strategies depending on the symptom pattern and the performance status of the patient. This study investigates the current evidence of pharmacological treatment for MBO during the last days of life. MATERIALS AND METHODS: A systematic literature search of the electronic databases PubMed/Medline and Embase from 1966-2011 was conducted. All retrieved publications were screened for relevance with regard to content and methodology on the basis of title and abstract. The full text was obtained for all relevant articles and for those articles where classification was unsure. RESULTS: The systematic literature search identified 5,431 papers. After screening, 90 publications were analyzed in detail. A total of 69 publications were excluded due to content or methodology. Finally, 21 manuscripts were considered for review. Only a few studies used high quality methodology and they all had rather small sample sizes. In summary, they show weak positive signs of efficacy for the use of somatostatin analogues or anticholinergics in the pharmacological treatment of MBO. CONCLUSION: These results do not lead to a clear evidence base for the pharmacological treatment of MBO in the last days of life. As adverse events were infrequent and clinical studies suggest efficient symptom relief, the authors recommend the use of octreotide as the first line medication. Butylscopolamine may be an alternative, where octreotide is not available. Higher costs for octreotide compared with butylscopolamine have to be considered. Available data do not allow assessing the effect of corticosteroids on symptoms caused by MBO when given during the last days of life. The English full text version of this article will be available in SpringerLink as of November 2012 (under "Supplemental").

[Accompanying evalution of funded projects in palliative medicine of the German Cancer Aid]. / Begleitevaluation des Förderschwerpunkts Palliativmedizin der Deutschen Krebshilfe.

INTRODUCTION: The German Cancer Aid funded 12 regional projects which developed different models of palliative home care. The realization of the projects were concurrently monitored and evaluated. MATERIAL AND METHODS: The funded projects were asked to document all patients who were cared for beginning in January 2009 using HOPE (Hospice and palliative survey), MIDOS (Minimal documentation system for palliative patients) and the Barthel index. Documentation was mandatory at the beginning and the end of care as well as when patients changed settings, for example when patients were transferred from a palliative care unit to a palliative home care service. Additionally the projects were visited by an independent observer. RESULTS: Overall the 12 projects documented 2,663 patients. Analysis revealed differences between the projects mainly concerning target groups and interventions. DISCUSSION: The results of this evaluation can support the discussion about the development of palliative home care in Germany with particular focus on possible interrelations between structures, target groups and possible outcomes of care.

[Cooperation between intensive care and palliative care : The status quo in German Comprehensive Cancer Centers]. / Zusammenarbeit von Intensivmedizin und Palliativmedizin : Eine Bestandsaufnahme an den deutschen onkologischen Spitzenzentren.

BACKGROUND: For intensive care patients with limited life expectancy the integration of palliative care in intensive care may be beneficial. However, little is known about the extent of this interdisciplinary collaboration. OBJECTIVES: The support given by palliative medicine in German oncological centers and used by the intensive care units should be recorded. MATERIAL AND METHODS: A descriptive survey was conducted in all of the 16 Comprehensive Cancer Centers (CCC) funded by German Cancer Aid. The questionnaires were sent to the head of department of the CCCs' specialized palliative care teams. Data were collected for the year 2016. Quantitative data were analysed to establish frequencies, given as mean and median. A qualitative section asked for trigger factors, i.e., patient characteristics triggering a palliative care consultation. Evaluation was inductively carried out by content analysis according to Mayring. RESULTS: Data from 15 of the 16 CCCs (94%) were obtained between July and August 2017. In 2016, the median of intensive care patients with palliative care consultations was 33 (minimum 0, maximum 100). The median of nine patients were transferred from an intensive care unit to a palliative care unit (minimum 1, maximum 30). Multidisciplinary ward rounds by both intensive and palliative care staff were available in two CCCs on a regular basis. Two CCCs implemented screening tools to integrate specialized palliative care into intensive care. From 23 responses concerning triggers, three categories were established, i.e., "team's decision and attitude", "patient's condition" and "desires of patients and relatives". CONCLUSIONS: Palliative care is available in German CCCs. However, the degree of integration of specialized palliative care into intensive care units is low. Screening tools are available to identify patients with complex needs and to trigger a palliative care consultation. These tools, as well as joint ward rounds of intensive and palliative care staff, can improve the quality of patient centred care.

End-of-life research on patients' attitudes in Germany: a feasibility study.

INTRODUCTION: So far, hardly any experience exists whether end-of-life research on patients' attitudes towards hastened death in Germany is feasible and how it is perceived by the patients. MATERIALS AND METHODS: During the initial phase of a validation study of the German version of the Schedule of Attitudes towards Hastened Death, we documented reasons for non-inclusion. RESULTS AND DISCUSSION: Of 124 patients seen on the participating palliative care units, 18 (15%) were finally included in the study. Reasons for non-inclusion were mainly due to the clinical status of the patients; the German specific history of involuntary euthanasia during the Nazi regime did not prevent patients to participate. CONCLUSION: We conclude that end-of-life research in Germany is indeed feasible, however, faces difficulties similar to the international experience.

Evaluation and comparison of two prognostic scores and the physicians' estimate of survival in terminally ill patients.

BACKGROUND: Most terminally ill patients request information about their remaining life span. Professionals are not generally willing to provide prognosis on survival, even though they are expected to be able to do so from their clinical experience. This study aims to find out whether the standardized instruments Palliative Prognostic Index (PPI) and the Palliative Prognostic Score (PaP-S) are appropriate, specific, and sensitive to estimate survival time in patients receiving inpatient palliative care in Germany. METHOD: PPI and PaP-S were assessed in addition to the core documentation data set of the Hospice and Palliative Care Evaluation for patients admitted to the palliative care units in Aachen, Bonn, and Cologne. Time of survival was assessed with repeated phone calls to the family and was defined as the difference between the day of completion of the instruments (excluded) and the day of death (included). RESULTS: Survival time was compared with physicians' estimations and prognostic scores in 83 patients. Whereas the estimates of the PPI and the PaP-S correlate highly, even higher correlations are found for the physicians' prognosis and the scores. Correlations between survival time and the prognostic scores or physicians' prognosis were lower. Physicians' estimations overestimated survival time on average fourfold. Estimations were more often correct for very good and very bad prognosis. DISCUSSION: The prognostic scores are not able to produce a precise reliable prognosis for the individual patient. Nevertheless, they can be used for ethical decision making and team discussions. Estimating survival time from clinical experience seems to be easier for very bad or very good prognosis for physicians.

[Validation of the new version of the minimal documentation system (MIDOS) for patients in palliative care : the German version of the edmonton symptom assessment scale (ESAS)]. / Validierung der neuen fassung des minimalen dokumentationssystems (MIDOS(2)) für patienten in der palliativmedizin : deutsche version der edmonton symptom assessment scale (ESAS).

BACKGROUND: repeated self-assessment of symptoms and problems of patients is required for quality assurance in palliative care. In Germany, the Minimal Documentation System (MIDOS) has been designed specifically for palliative care patients. To adapt MIDOS as a German version of the Edmonton Symptom Assessment Scale (ESAS) a revised version of MIDOS(2) has now been validated. Two original items on average and highest pain intensity (11-step NRS) were replaced by one item on pain intensity on a 4-step VRS and the assessment of vomitus, lack of appetite and depressive mood were added to the assessment of nausea, dyspnoea, constipation, weakness, tiredness, anxiety, others and well-being which were already part of the original version. METHOD: all patients admitted to the palliative care unit were asked to participate voluntarily in this study. MIDOS(2), the German versions of the ESAS and the quality of life questionnaire EORTC QLQ-C15-Pal were completed on the same day during their inpatient stay. MIDOS(2) was repeated on the next day. RESULTS: from August 2009 to March 2010, 60 patients (55% men, 45% women; mean age = 64.3, range = 23.6-92.4 years) treated in the palliative care unit completed the study. Self-assessment with MIDOS(2) was reported to burden the patients only slightly (mean burden = 1.1, range: 0 = no to 10 = maximum burden on a NRS), application of MIDOS(2) took between 1 and 7 min (mean duration = 2.4 min) and 61.7% of the patients preferred MIDOS(2) (with VRS) to ESAS (30%) (with NRS) for routine daily documentation. External criterion validity by inter-item correlations of MIDOS(2) with ESAS varied between r = .533 (anxiety) and .881 (nausea) and between r = .348 (depressive mood) and .717 (constipation) for the corresponding items of the EORTC QLQ-C15-Pal. Test-retest reliability between the sum scores of symptoms and problems reported in MIDOS(2) on the first day and on the second day was .688, and r = .573 for well-being. CONCLUSION: MIDOS(2) can be recommended for routine daily documentation in palliative care because of low burden, little expenditure of time and high participation of patients. Statistical evaluation indicated good external validity and reliability.

The ethical imperative to relieve suffering for people with tuberculosis by ensuring access to palliative care.

Patients diagnosed with tuberculosis (TB) continue to experience clinical uncertainty and high mortality and to bear a high burden of symptoms and other concerns. Additional concerns may be family support needs and stigma, particularly the latter, as TB and human immunodeficiency virus (HIV) coinfection are common. Human rights covenants, global health policy and the End TB Strategy all recommend palliative care as an essential component of care services. As established in the resolution adopted by the World Health Assembly (WHA) on "Strengthening of palliative care as a component of comprehensive care throughout the life course", there is a "need for palliative care across disease groups (non-communicable diseases, and infectious diseases, including HIV and multidrug-resistant tuberculosis), and across all age groups". We address the ethical imperative to respect the dignity and fundamental rights of people with TB by providing palliative care. We review the evidence for the need for person-centred palliative care and highlight novel models that utilise the skills and training functions of specialist palliative care to achieve better care. We outline simple recommendations for the delivery of specialist and generalist palliative care, offer suggestions on how to ensure optimal coverage by enabling access to appropriate good-quality palliative care at all points of the health system, including alongside treatment. Finally, we set out the current priorities for research and policy to ensure that quality care is delivered to all who need it irrespective of treatment outcome, to minimise distress and to optimise engagement in treatment and care.