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.

[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.

Unpredictable episodic breathlessness in patients with advanced chronic obstructive pulmonary disease and lung cancer: a qualitative study.

PURPOSE: The internationally consented definition and categorization describe two categories of episodic breathlessness: predictable (with known triggers) and unpredictable. The link of known triggers only to predictable episodes can be read that unpredictable episodes have none known trigger. Our aim was to illuminate patients' experiences with episodes of unpredictable breathlessness, to collect descriptions of the episodes' impact on the patients' lives, and, in turn, the patients' individual coping strategies in this connection. DESIGN: Qualitative study using semi-structured in-depth interviews with patients suffering from unpredictable episodes of breathlessness and chronic obstructive pulmonary disease (COPD; Global Initiative for Obstructive Lung Disease III and IV) or lung cancer (all stages). Interviews were audio-recorded, transcribed verbatim, and analyzed using Framework Analysis. RESULTS: One hundred one patients were screened in a large university hospital; ten participants fulfilled the inclusion criteria and provided consent. The experienced episodes were evaluated as unpleasant and with higher intensity compared to predictable episodes. Non-pharmacological interventions were identified as useful coping strategies. Interestingly, although patients experienced the episodes in an unpredictable manner, a trigger could be detected retrospectively for the majority of cases (mostly emotions (especially panic) and, occasionally, physical exertion). Unpredictable episodes are less frequent than previously assumed. CONCLUSION: The unpredictability of unpredictable breathless episodes refers to the patients' experience that these episodes occur "out-of-the-blue." However, a known trigger can be identified for the majority of unpredictable breathless episodes. These are therefore triggered as well. Further research needs to describe more possible triggers, to inquire the prevalence of unpredictable episodic breathlessness, and to develop effective management strategies.

[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.

[Healthcare structures in palliative care medicine : Flowchart for patients with incurable cancer]. / Versorgungsstrukturen in der Palliativmedizin : Behandlungspfad für Patienten mit einer nichtheilbaren Krebserkrankung.

BACKGROUND: In Germany the structures of generalized and specialized palliative care services have considerably increased over the last decade with respect to the number, quality and differentiation. The goal is to improve or to maintain the quality of life for patients with life-threatening illnesses. AIM: The current structures of generalized and specialized palliative care services in Germany are presented. MATERIAL AND METHODS: The structures of healthcare services are presented primarily based on the S3 guidelines on palliative care for patients with incurable cancer. An extrapolation to all patients with incurable illnesses and limited life-expectancy has been carried out. RESULTS: Palliative care in Germany can be differentiated into two sectors. Generalized palliative care provides care for patients with a low or moderately complex situation on general hospital and oncology wards, in long-term care facilities and in the domestic environment. Specialized palliative care services manage patients with a highly complex situation in palliative care units, by a palliative care support team in hospitals or in palliative medical day care centers and as outpatients in specialized outpatient palliative home care, in specialized palliative outpatient clinics or day care hospices. Inpatient hospices and the outpatient hospice services are overlapping sectors and can be assigned to both generalized and specialized palliative care. CONCLUSION: Despite a good development in recent years, a nationwide and sufficient provision of palliative care services has still not been achieved and some services have hardly been developed, e. g. palliative outpatient clinics. Hospital palliative care support teams should soon be available in all hospitals caring for patients with life-threatening illnesses, due to the requirements of the Hospice and Palliative Care Act from 2015.

[Characteristics of patients with breathlessness - results of the german hospice and palliative care evaluation]. / 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.

[State of integration of palliative care at Comprehensive Cancer Centers funded by German Cancer Aid]. / Integration der Palliativmedizin in die von der Deutschen Krebshilfe e. V. geförderten onkologischen Spitzenzentren.

BACKGROUND: Similarities and differences of integration of palliative care in clinical care, research and education structures at German Comprehensive Cancer Centers (CCC) are not known in detail. OBJECTIVE: Provide an overview of availability and the way of integration of specialized palliative care at CCCs funded by the German Cancer Aid (Deutsche Krebshilfe, DKH). METHOD: We conducted structured interviews from May to August 2014 with heads of palliative care departments (personally or by telephone). The interviews included a quantitative and a qualitative part. Other stakeholders of CCCs were asked the questions of the qualitative part. We evaluated the qualitative data using the content analysis by Mayring and MAXQDA 11.0. SPSS 21.0 was used for quantitative analysis. RESULTS: 26 interviews were realized in 13 CCCs with 14 sites, which received funding, by DKH till August 2014 (one CCC had two university hospitals). Of these, 12 sites had a palliative care unit (86%), 11 sites had palliative care consulting services available (79%). Participation of palliative care specialists in tumor boards is not provided in 3 institutions (21%) and is often not feasible on regular basis in the other institutions, due to staffing shortage. In 7 sites (50%) defined criteria to integrate palliative care into CCCs were available. In the last 5 years specialized palliative care of 4 sites received an invitation for a research project by another department within the CCC (29%). 10 sites (71%) had started own palliative care research projects. Chairs in palliative care were available in 4 CCCs (29%). CONCLUSION: The extent and depth of palliative care integration in the 14 CCC sites is heterogeneous.

[Episodic breathlessness: translation and consenting of the international definition using the Delphi method]. / Atemnotattacken: Übersetzung und Konsentierung der internationalen Definition im Rahmen einer Delphi-Befragung.

BACKGROUND: Similar to pain, refractory breathlessness can occur episodically. Episodic Breathlessness is a distressing symptom in patients with advanced life-limiting disease. The lack of a universal definition impedes symptom understanding in clinical practice and effective management, respectively. The aim of the study was to formally consent a German translation of the English definition and terminology of episodic breathlessness. METHODS: A web-based Delphi survey was conducted with German breathlessness experts (breathlessness working group of Germany's National Guideline (S3) for Palliative Care). Drafts of German-language definitions und terminology were assessed using structured questionnaires by binary rating or rankings, respectively. Optional comments were analysed by content analysis. Consensus was defined by ≥ 70% agreement among participants. RESULTS: In two resulting Delphi-rounds 8/16 (50%) und 11/16 (69%) experts, 30-59 years of age, 50%/55% female, participated. After the second round, consensus was reached for the symptom's description "Atemnotattacke" (73%) and a German-language definition (90%). The terms "vorhersehbar" vs. "unvorhersehbar" were directly consented for the categorization (88%). CONCLUSION: The formally consented German definition and terminology of episodic breathlessness enable clearer symptom understanding and provide a precise basis for education and research on the symptom and its management also in Germany. Effective management options are warranted to improve quality of life of suffering patients and their relatives.

Population, mortality and place of death in Germany (1950-2050) - implications for end-of-life care in the future.

OBJECTIVES: European populations are ageing, but data on the associated end-of-life care needs are scarce. This study aimed to analyse population, mortality and place of death (PoD) trends in Germany since 1950, and to project mortality by PoD until 2050. STUDY DESIGN AND METHODS: Secondary analysis of national statistics on population, mortality and PoD by age and gender. Future numbers and proportions of deaths by PoD - hospital deaths (HDs) and non-hospital deaths (NHDs) - were based on recent trends (2005-2009). Linear models accounted for the effect of age and gender. RESULTS: The German population increased by 19.0% between 1950 and 2002, and has remained relatively stable ever since. However, it is expected that it will decrease (15.4%) from 2009 to 2050 (from 81.8 to 69.4 million). The annual number of deaths has shown an increasing trend, except for a decrease in 1975-2004. A 26.0% increase is expected from 2009 to 2050 (854,544 to 1,077,000 deaths). Older people (age ≥ 75 years) will account for 87.8% of all deaths in 2050 (64.4% in 2009). The proportion of HDs was stable, with an annual mean of 47.0% (range 44.9-47.8%). The models estimated that most people will continue to die outside of hospital in 2050 (48.6 or 54.1%), and absolute numbers of both HDs and NHDs will increase from 2009 to 2050 [HD: by 20.1 million (30.6%); NHD: by 35.5 million (17.0%)]. CONCLUSIONS: Unlike in other industrialized countries, most people in Germany die outside of hospital. The need to plan for growing end-of-life care needs and ageing is urgent in Germany but also applies to the rest of Europe. A joint European policy must inform national strategies.

[Pharmacological therapy of refractory dyspnoea : a systematic literature review]. / Medikamentöse therapie der refraktären atemnot : eine systematische literaturübersicht.

BACKGROUND: The management of breathlessness in patients with life-limiting diseases is still difficult and complex. This systematic review aims to summarize and analyze clinical trials of four different treatment options (opioids, benzodiazepines, corticosteroids and oxygen) for the relief of breathlessness. MATERIALS AND METHODS: A systematic review based on database searching of Medline, Embase and Cochrane Library was carried out and experts in the field were contacted. The search was conducted in July 2011. Included were systematic reviews, controlled and randomized controlled clinical trials in patients suffering from breathlessness due to advanced disease. Studies were selected, extracted and the data analyzed by two independent reviewers using narrative synthesis. RESULTS: The search retrieved 2,559 hits. Five systematic reviews and 10 randomized controlled trials were included. Opioids (oral and parenteral) were the only drug group with evidence for relief of breathlessness. Benzodiazepines failed to show a significant effect for the relief of breathlessness intensity but demonstrated a tendency towards benefit. No studies were identified assessing steroids. There is no additional benefit from oxygen compared to room air in non-hypoxemic cancer patients but there is a statistically significant benefit of oxygen in non-hypoxemic COPD patients. CONCLUSION: Oral and parenteral opioids seem to be effective for the relief of breathlessness and should be the first choice for pharmacological treatment. Benzodiazepines should be used with reservation. There is not enough evidence for the use of steroids except for COPD patients. Non-hypoxemic cancer patients do not benefit from oxygen. The English full text version of this article will be available in SpringerLink as of November 2012 (under "Supplemental").

Preferences for place of death if faced with advanced cancer: a population survey in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain.

BACKGROUND: Cancer end-of-life care (EoLC) policies assume people want to die at home. We aimed to examine variations in preferences for place of death cross-nationally. METHODS: A telephone survey of a random sample of individuals aged ≥16 in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain. We determined where people would prefer to die if they had a serious illness such as advanced cancer, facilitating circumstances, personal values and experiences of illness, death and dying. RESULTS: Of 9344 participants, between 51% (95% CI: 48% to 54%) in Portugal and 84% (95% CI: 82% to 86%) in the Netherlands would prefer to die at home. Cross-national analysis found there to be an influence of circumstances and values but not of experiences of illness, death and dying. Four factors were associated with a preference for home death in more than one country: younger age up to 70+ (Germany, the Netherlands, Portugal, Spain), increased importance of dying in the preferred place (England, Germany, Portugal, Spain), prioritizing keeping a positive attitude (Germany, Spain) and wanting to involve family in decisions if incapable (Flanders, Portugal). CONCLUSIONS: At least two-thirds of people prefer a home death in all but one country studied. The strong association with personal values suggests keeping home care at the heart of cancer EoLC.

Are we heading in the same direction? European and African doctors' and nurses' views and experiences regarding outcome measurement in palliative care.

OBJECTIVE: To examine and compare doctors' and nurses' views and experiences regarding outcome measurement in palliative care, including patient-reported outcome measures (PROMs). METHODS: A web-based survey developed through expert review and piloting was conducted in Europe and Africa with palliative care professionals working in clinical care, audit and research. RESULTS: The overall participation rate was 42% (663/1592) and the overall completion rate was 59% (392/663). Of these respondents, 196 were doctors (51% male, mean 47 years) and 104 were nurses (84% female, mean 45 years). Doctors' most common reported reasons for not using tools were time constraints followed by lack of training. For nurses, it was lack of training followed by time constraints. Provision of information and guidance influenced willingness to use measures. For those that used tools, most reported favourable outcome measurement experiences. Both prioritized brief PROMs, and measures that included physical and psychological domains. For clinical purposes, the main advantage for doctors was assessment/screening, and clinical decision making for nurses. For research, doctors were most influenced by a measure's comparability with national/international literature followed by its validation in palliative care. For nurses, validation in palliative care was followed by tool access. CONCLUSION: Overall these respondents shared similar views and experiences, and both were influenced by similar factors. Multidisciplinary outcome measurement education and training is feasible and required. Multidimensional and brief PROMs that include physical and psychological domains need to be prioritized, and access to freely available, validated and translated tools is needed to ensure cross-national comparisons and coordination of international research.

[Symptom management of pain and breathlessness]. / Symptomatische Behandlung von Schmerzen und Atemnot.

Pain and breathlessness are common symptoms in advanced disease. Pain should be treated with a combination of non-opioids and opioids. Coanalgesics play an important role in the treatment of neuropathic pain. Side-effects of opioids should be treated prophylactically but can make opioid rotation necessary. Management of breathlessness needs a combination of non-pharmacological and pharmacological measures. Fans and rollators showed to be effective in relieving breathlessness. Opioids are the drugs of choice for breathlessness. The efficacy of benzodiazepines could not be confirmed, they should only be used as second line therapy. Also, oxygen should only be given regularly after an individual test.

[Care of the dying in the hospital: initial experience with the Liverpool Care Pathway (LCP) in Germany]. / Sterbebegleitung im Krankenhaus--erste Erfahrungen mit dem "Liverpool Care Pathway" (LCP) in Deutschland.

BACKGROUND AND OBJECTIVE: In the last few years public interest in the care of severely ill and dying patients has been growing. The aim of palliative medicine is to improve the care of the dying. However, this is still not achieved in many general hospitals. The Liverpool Care Pathway (LCP) for the care of the dying intends to change this situation. The aim of this study was to explore the views of professionals using the LCP as a framework for ensuring good care of the dying. METHODS: A qualitative study was conducted with an interdisciplinary focus group of ten professionals (nurses, physicians, spiritual adviser, social worker, physiotherapist and art therapist) to explore their views and experience after implementation of the LCP in a palliative care unit (PCU). The recorded discussion between them was transcribed verbatim and analysed using content analysis by three independent reviewers. RESULTS: Seven nurses and three physicians with an average work experience of 16 years each took part in the focus group. Based on the experience of 24 patients, the LCP was evaluated as very positive by all participants. In particular, three aspects were emphasized as having high relevance for a good quality of care: improvement of self-confidence, better control of symptoms, and enhancement of the communication between professionals and with patients and their relatives. However, some weaknesses were also mentioned, e.g. inadequate effort of documenting the beginning of implementing the scheme. CONCLUSION: The LCP was well received by professionals after the initial implementation of the LCP in a German PCU. The LCP was judged as an appropriate and helpful framework in the care of the dying.

Effect of four vehicles on the pH of calcium hydroxide and the release of calcium ion.

Nonsetting calcium hydroxide pastes are commonly used in endodontic practice. The desired therapeutic effect of such a paste is in part dependent on the dissociation of calcium hydroxide into hydroxy ion and calcium ion. This in turn is influenced by the vehicle used to make the paste. This investigation attempts to quantitatively estimate the release of hydroxyl ion and calcium ion from pastes made by using distilled water, normal saline solution, camphorated monochlorophenol and also an experimental vehicle, propylene glycol. The results of this study indicate that propylene glycol induces the most favorable release characteristics of the two ionic species.